Congenital Upper Limb Anomalies Reference Guide

CONGENITAL UPPER LIMB ANOMALIES DATA COLLECTION REFERENCE GUIDE

Version 1.0.0 Revised: August 31st, 2018

Measuring results that matter

Upper Limb Function

Congenital Upper Limb Anomalies

CONGENITAL UPPER LIMB ANOMALIES

We are thrilled that you are interested in measuring outcomes for your patients with congenital upper limb anomalies according to ICHOM standards. It is our hope that this Reference Guide will facilitate the process of implementing our Standard Set and ensure collection of comparable data for global benchmarking and learning.

© 2018 ICHOM. All rights reserved. When using this set of outcomes, or quoting therefrom, in any way, we solely require that you always make a reference to ICHOM as the source so that this organization can continue its work to define more standard outcome sets.

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 1 Introducing ICHOM and the Reference Guide

ICHOM brings together patient representatives, clinician leaders, and registry leaders from all over the world to develop Standard Sets, comprehensive yet parsimonious sets of outcomes and case-mix variables we recommend all providers track.

Each Standard Set focuses on patient-centered results, and provides an internationally-agreed upon method for measuring each of these outcomes. We do this because we believe that standardized outcomes measurement will open up new possibilities to compare performance globally, allow clinicians to learn from each other, and rapidly improve the care we provide our patients.

Our Standard Sets include initial conditions and risk factors to enable meaningful case-mix adjustment globally, ensuring that comparisons of outcomes will take into account the differences in patient populations across not just providers, but also countries and regions. A comprehensive data dictionary, as well as scoring guides for patient-reported outcomes, is included in the appendix.

Our aim is to make Standard Sets freely accessible to healthcare institutions worldwide to begin measuring, and ultimately benchmark the outcomes they achieve. In order to have a guide from which we can benchmark outcomes, we require feedback from initial implementation efforts.As such, this Reference Guide may undergo revisions on a regular basis. If you have any suggestions or would like to provide feedback, please contact [email protected] Working Group Members for Congenital Upper Limb Anomalies

The following individuals dedicated both time and expertise to develop the ICHOM Standard Set for Congenital Upper Limb Anomalies in partnership with ICHOM, under the leadership of Mr. Bran Sivakumar, Consultant Plastic Surgeon at Great Ormond Street Hospital, United Kingdom and Dr. Christianne van Nieuwenhoven, Consultant Plastic Surgeon at Erasmus MC, Netherlands.

Australia Italy Sweden United States David McCombe Tracy Fairplay Anna Gerber Ekblom Amir Taghinia Richard Lawson Liselotte Hermansson Amy Lake Netherlands Brian Labow Canada Christianne van United Kingdom Charles Goldfarb Kristen Davidge Nieuwenhoven Alethse De la Torre Donald Bae Monique Ardon Andrea Jester Kerby Oberg Bran Sivakumar Lesley Butler Jason Arora Scott Oishi

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 2 Supporting Organizations

The Congenital Upper Limb Anomalies Standard Set is made possible only through the support of the following organizations.

Thank you.

Conditions and Treatment Approaches Covered for Congenital Upper Limb Anomalies

For Congenital Upper Limb Anomalies, the following conditions and treatment approaches (or interventions) are covered by our Standard Set.

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 3

ICHOM Standard Set for Congenital Upper Limb Anomalies

Case-Mix Variables Patient Population Measure Supporting Information Timing Data Source Patient Demographic Factors Child date of birth N/A Age at first encounter N/A Parent-reported, with team Clinical, or Sex Sex at birth Administrative All patients Race/ethnicity Determined by country On referral data Weight at birth N/A Length of gestation N/A Karyotype of Only if available Clinical infant/foetus

Family Demographic Factors Siblings with N/A Anomalies Mother date of birth N/A Assisted fertilisation N/A Parent-reported, Consanguinity N/A Clinical, or All patients On referral Maternal pre- Administrative N/A gestational diabetes data First trimester alcohol, drug or medication N/A use

Baseline Clinical Status Patient Comorbidities N/A On all forms All patients OMT Classification N/A Clinical On referral Affected Side N/A

Treatment All patients Intervention type N/A Ongoing Clinical

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 4

Outcomes

Patient Population Measure Supporting Information Timing Data Source Burden of Care to Patient Major complications Adverse or unexpected event 6 months Clinical/ from interventions arising from intervention All patients post- Administrative Medical care and Tracked with measurement of intervention data readmissions utilisation of health services

Degree of Health 1, 2 6, years & Tracked with Goniometry end of paediatric care Tracked with Manual Muscle 6 years & end Clinical Strength Testing of paediatric Upper limb function Tracked with Dynamometry care Tracked with additional 6 months, 1, 2 questions years Tracked with PROMIS Upper 6, 8, 12, 15 Extremity years & end of Tracked with Aesthetics Aesthetics paediatric care questions All patients Tracked with PROMIS Anxiety 8, 12, 15 years Mental Health Tracked with PROMIS & end of Depression paediatric care 6, 8, 12, 15 Patient/parent- Tracked with PROMIS years & end of reported Paediatric Global Health 7 paediatric care (<18 years) Health-Related Tracked with PROMIS Global Quality of Life 18 years Health 10 8, 12, 15 years Tracked with PROMIS Peer & end of Relationships paediatric care

Timings

We encourage measurement according to the time points included in the above table. Recognising that different countries have established practices and may take time to transition to these time points, we have agreed age categories for measurement that fit around the recommended specific ages:

6 months: +/- 1 month 1 year: +/- 1 month 2 years: +/- 1 month 8 years: 8-9 years 12 years: 11 - 13 years 15 years: 14 - 15 years End of Paediatric Care: 16 - 18 years (according to the policy of each institution for end of paediatric care) Post-operative period: up to 6 months following the date of the operation

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 5 Follow-Up Timeline and Sample Questionnaires

The following timeline illustrates when Standard Set variables should be collected from patients, clinicians, and administrative sources. Links to the sample questionnaires may be found in the legend below.

T0 6 months 1 year 2 years Example 6 months 6 years 8 years 12 years 15 years 16-18 years surgical post- intervention intervention The following questionnaires should be Note: applies to all administered at the indicated time points interventions at any time point

Clinician-Reported Form - 6 month Patient-Reported Form - 1 year, 2 years Clinician-Reported Form - 1 year, 2 years Complications post-intervention Patient-Reported Form - 6 years Clinician-Reported Form - 6 years, 16-18 years Patient-Reported Form - 8 years, 12 years, 15 years, 16-18 years

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 6 Collecting Patient-, Parent-, and Clinician-Reported Outcome Measures

Congenital Upper Limb Anomalies Licensing Information Scoring Guide Survey Used Joint Mobility Questions - Patient/ There are no licensing requirements Patient Representative to use these questions. PROMIS Upper Extremity - Patient/ PROMIS measures are copyrighted. Patient Representative All English, printable, PDF versions PROMIS Global Health - Patient/ of PROMIS are publicly available for Patient Representative individual clinical trials, academic research studies, healthcare or PROMIS Peer Relationships - clinical applications, community- Patient/Patient Representative based or educational programs, Please refer to http://www. PROMIS Anxiety - Patient/Patient or other discrete applications healthmeasures.net/explore- Representative with defined health measurement measurement-systems/promis/ objectives. For all other uses, obtain-administer-measures for please refer to http://www. more information. healthmeasures.net/explore- measurement-systems/promis/ obtain-administer-measures for PROMIS Depression - Patient/ more information. Fee waivers can Patient Representative be requested for academic or other non-commercial use. Email help@ HealthMeasures.net for additional queries on permissible use or to request non-English versions of PROMIS measures. Goniometry - Clinician Follow the clinical assessment recommendations of the American Dynamometry - Clinician Society of Hand Therapists. Manual Muscle Strength Testing - Use the Medical Research Council Clinician MMST grading.

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 7 The Growing ICHOM Community

There is a growing community of healthcare providers implementing the ICHOM Standard Sets. To support your organisation in implementing the set and the measurement of outcomes data, we have outlined a framework to guide the implementation and reporting of patient-centered outcomes. For further information or to enquire about Implementation support offered by ICHOM, please contact the Implementation team: [email protected]

Implementation framework: The framework below, outlines the structured process to guide the implementation of an ICHOM Standard Set at your organisation. Typically an implementation project takes 9 months to complete.

§ Assess IT and informatics infrastructure within pilot site § Perform a gap analysis of what data is collected versus what isn’t Diagnostic and § Assess and define scope for project Service Scoping § Secure PROM licenses for Standard Set as required § Determine and process map pilot implementation site

§ Recruit local Project Manager § Secure additional IT/Information platforms to address data gaps Preparation § Establish project team and governance structure § Plan for launch with key stakeholders to achieve clinical buy-in Change § Develop an implementation plan to guide the project Management § Deploy IT solution Roll Out § Pilot data collection with part of dataset § Assess Pilot period § Refine Workflow and IT systems using PDSA cycles

§ Scale up to implement full dataset for all patients within scope Measurement § Collect data on every patient, ensure data completeness and validity § Troubleshoot full dataset issues & quality assure data through audit § Begin to analyze full dataset and report to clinicians and patients

ICHOM is also able to support organisations with a variety of support models:

1. Capacity building – direct advisory support 2. Community models – supporting a community of providers in outcomes adoption and innovation 3. Education – workshops and short courses regarding Value Based Healthcare and implementation skills

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 8

Translating the Set Tools: PROMs within the ICHOM Sets are available in a number of languages. To check the availability of translations, we advise contacting the Tool authors directly to obtain and translate the PROM surveys into your desired language. To independently translate PROM surveys, we recommend following the 10 steps outlined below:*1

Step 1 Preparation Initial work carried out before the translation work begins Step 2 Forward Translation Translation of the original language, also called source, version of the instrument into another language, often called the target language Step 3 Reconciliation Comparing and merging more than one forward translation into a single forward translation Step 4 Back Translation Translation of the new language version back into the original language Step 5 Back Translation Review Comparison of the back-translated versions of the instrument with the original to highlight and investigate discrepencies between the original and the reconciled translation, which is then revised in the process of resolving the issues Step 6 Harmonization Comparison of back translations of multiple language versions with each other and the original instrument to highlight discrepencies between the original and its derivative translations, as well as to achieve a consistent approach to translation problems Step 7 Cognitive Debriefing Testing the instrument on a small group of relevant patients or lay people in order to test alternative wording and to check understandability, interpretation, and cultural relevance of the translation Step 8 Review of Cognitive Comparison of the patients’ or lay persons’ interpretation of the Debriefing Results and translation with the original version to highlight and amend Finalisation discrepencies Step 9 Proofreading Final review of the translation to highlight and correct any typographic, grammatical or other errors Step 10 Final Report Report written at the end of the process documenting the development of each translation

*These ten steps follow the ISPOR Principles of Good Practice:The Cross-Cultural Adaptation Proccess for Patient-Reported Outcomes Measures 1 Wild, D., Grove, A., Martin, M., Eremenco, S., McElroy, S., Verjee-Lorenz, A., et al. (2005). Principles of good practice for the translation and cultural adaptation process for patient-reported outcomes (PRO) measures: Report of the ISPOR task force for translation and cultural adaptation. Value in Health, 8(2), 94–104. doi:10.1111/j.1524-4733.2005.04054.x.

For any questions about implementation please contact us at: [email protected]

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 9 Appendix

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 10 Introduction to the Data Dictionary

This data dictionary is designed to help you measure the ICHOM Congenital Upper Limb Anomalies Standard

Set as consistently as possible to the Working Group recommendation. ICHOM is actively preparing for benchmarking efforts based on this data, and all data submitted for comparisons will need to be transformed into the following data structure if not already structured as such. We are happy to provide an Excel version of this data dictionary for technical use.

Please timestamp all variables. Some Standard Set variables are collected at multiple timepoints, and we will ask you to submit these variables in a concatenated VARIABLEID_TIMESTAMP form for future analyses. For example, VARIABLEID_BASE (baseline); VARIABLEID_6MO (6 month follow-up); VARIABLEID_1YR (1 year follow-up), etc.

Case-Mix Variables CASE-MIX VARIABLES Variable ID: N/A Variable: Patient ID Definition: Indicate the patient's medical record number Supporting Definition: This number will not be shared with ICHOM. In the case patient-level data is submitted to ICHOM for benchmarking or research purposes, a separate ICHOM Patient Identifier will be created and cross-linking between the ICHOM Patient Identifier and the medical record number will only be known at the treating institution Inclusion Criteria: All patients Timing: On all forms Data Source: Administrative or clinical Type: Numerical Response Options: According to institution

Patient Demographic Factors Variable ID: CHILDDOB Variable: Child Date of Birth Definition: Indicate the patient's date of birth Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Date by DD/MM/YYYY Response Options: DD/MM/YYYY Variable ID: SEX Variable: Sex Definition: Indicate the patient’s sex at birth Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: 1 = Male 2 = Female 999 = Undisclosed Variable ID: ETNIC Variable: Race/ethnicity Definition: Varies by country and should be determined by country (not for cross-country comparison) Supporting Definition: N/A Inclusion Criteria: All patients

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 11 CASE-MIX VARIABLES Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: N/A Variable ID: BIRTHWEIGHT Variable: Weight at birth Definition: Indicate the recorded weight at birth Supporting Definition: Grams Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value Variable ID: GESTLENGTH Variable: Length of gestation Definition: Indicate the length of gestation in completed weeks Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value Variable ID: FIRSTENC Variable: Age at first encounter with team Definition: Indicate the patient's age at first encounter with team Supporting Definition: Recorded in months at 24 months and younger. Recorded in years if older than 24 months Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value Variable ID: KARYOTYPE Variable: Karyotype of infant/foetus Definition: Indicate the results of the karyotype (if available) Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options:

Family Demographic Factors Variable ID: SIBANOM Variable: Siblings with Anomalies Definition: Patient siblings with upper limb congenital malformations Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: 0 = No 1 = yes Variable ID: MULTPREG Variable: Multiple Pregnancy Definition: Indicate whether the patient is a twin Supporting Definition: N/A Inclusion Criteria: All patients

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 12 CASE-MIX VARIABLES Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: 0 = No 1 = yes Variable ID: MALFORMMULT Variable: Number of Malformed in Multiple Pregnancy Definition: Indicate the number of children with CULA from the same pregnancy Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to MULTPREG Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Numerical Response Options: Numerical value Variable ID: MOTHERAGE Variable: Mother's date of birth Definition: Indicate the mother's date of birth Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Date by DD/MM/YYYY Response Options: DD/MM/YYYY Variable ID: ASSFERT Variable: Assisted fertilisation Definition: Indicate whether the patient was conceived through assisted fertilisation Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: 0 = No 1 = yes Variable ID: FERTTYPE Variable: Assisted fertilisation type Definition: Indicate what type of fertilisation the patient was conceived through Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to ASSFERT Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: Variable ID: CONSANG Variable: Consanguinity Definition: Indicate whether the mother is blood-related to the father (1st/2nd degree) Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: 0 = No 1 = yes Variable ID: PREGESTDIAB Variable: Maternal pre-gestational diabetes Definition: Indicate whether the mother was diagnosed with diabetes before pregnancy Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 13 CASE-MIX VARIABLES Response Options: 0 = No 1 = yes Variable ID: FIRSTTRIMMED Variable: First trimester medication Definition: Indicate whether the mother took medication in the first trimester of pregnancy Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: 0 = No 1 = yes Variable ID: FIRSTTRIMMEDTYPE Variable: Type of medication taken in first timester Definition: Indicate what type of medication was taken during the first trimester of pregnancy Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to FIRSTTRIMMED Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: Variable ID: FIRSTTRIMALC Variable: First trimester alcohol consumption Definition: Indicate whether alcohol was consumed during the first trimester of pregnancy Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: 0 = No 1 = yes Variable ID: FIRSTTRIMDRUG Variable: First trimester drug consumption Definition: Indicate whether recreational drugs were consumed during the first trimester of pregnancy Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Parent-reported, Clinical, or Administrative data Type: Single answer Response Options: 0 = No 1 = yes

Baseline Clinical Status Variable ID: COMORB Variable: Patient Comorbidities Definition: Indicate whether the patient has any comorbidities Supporting Definition: N/A Inclusion Criteria: All patients Timing: On all forms Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: COMORB_PAED Variable: Comorbidities of paediatric patient Definition: Indicate if the patient has any of the following comorbidities Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to COMORB Timing: On all forms

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 14 CASE-MIX VARIABLES Data Source: Clinical Type: Multiple answer Separate multiple entries with ";" Response Options: 0 = No other diseases 1 = Cardiac anomalies or dysfunction 2 = GU anomalies or dysfunction 3 = Developmental delay or learning difficulty 4 = Psychiatric or behavior disorder 5 = Infection or toxin mediated disease 6 = GI anomalies or dysfunction 7 = Other musculoskeletal anomalies or dysfunction 8 = Other craniomaxillofacial anomalies 9 = Pulmonary anomalies or dysfunction 10 = Hematological anomalies or dysfunction 11 = Immunological anomalies or dysfunction 12 = Neurological anomalies or dysfunction Variable ID: AFSIDE Variable: Affected Side Definition: Indicate which side the malformation is Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Left 2 = Right 3 = Both Variable ID: OMT Variable: OMT Classification Definition: Indicate the OMT classification Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Malformation 2 = Deformation 3 = Dysplasia Variable ID: OMT_MAL_L Variable: Malformation classification (Left) Definition: Based on OMT classification, please indicate the type of malformation on the left side Supporting Definition: N/A Inclusion Criteria: If "1 = Malformation" to OMT AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Abnormal axis formation/Difference: Entire Upper Limb 2 = Abnormal axis formation/Difference: Hand Plate Variable ID: OMT_MAL_R Variable: Malformation classification (Right) Definition: Based on OMT classification, please indicate the type of malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "1 = Malformation" to OMT AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Abnormal axis formation/Difference: Entire Upper Limb DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 15 CASE-MIX VARIABLES 2 = Abnormal axis formation/Difference: Hand Plate Variable ID: OMT_MAL_EUL_L Variable: Entire upper limb classification (Left) Definition: Based on OMT classification, please indicate the type of abnormal axis formation/difference: Entire Upper Limb on the left side Supporting Definition: N/A Inclusion Criteria: If "1 = Abnormal axis formation/Difference: Entire Upper Limb" to OMT_MAL AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Proximal-distal axis 2 = Radial-ulnar axis 3 = Dorsal-ventral axis 4 = Unspecified axis Variable ID: OMT_MAL_EUL_R Variable: Entire upper limb classification (Right) Definition: Based on OMT classification, please indicate the type of abnormal axis formation/difference: Entire Upper Limb on the right side Supporting Definition: N/A Inclusion Criteria: If "1 = Abnormal axis formation/Difference: Entire Upper Limb" to OMT_MAL AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Proximal-distal axis 2 = Radial-ulnar axis 3 = Dorsal-ventral axis 4 = Unspecified axis Variable ID: OMT_MAL_EUL_PDA_L Variable: Proximal-distal axis classification (Left) Definition: Based on OMT classification, please indicate the type of Proximal-distal axis malformation on the left side Supporting Definition: N/A Inclusion Criteria: If "1 = Proximal-distal axis" to OMT_MAL_EUL AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Brachymelia with brachdactyly 2 = Symbrachydactyly 3 = Transverse deficiency 4 = Intersegmental deficiency 5 = Whole limb duplication/triplication Variable ID: OMT_MAL_EUL_PDA_R Variable: Proximal-distal axis classification (Right) Definition: Based on OMT classification, please indicate the type of Proximal-distal axis malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "1 = Proximal-distal axis" to OMT_MAL_EUL AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Brachymelia with brachdactyly 2 = Symbrachydactyly 3 = Transverse deficiency DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 16 CASE-MIX VARIABLES 4 = Intersegmental deficiency 5 = Whole limb duplication/triplication Variable ID: OMT_MAL_EUL_PDA_2_L Variable: Symbrachydactyly classification (Left) Definition: Based on OMT classification, please indicate the type of Symbrachydactyly on the left side Supporting Definition: N/A Inclusion Criteria: If "2 = Symbrachydactyly" to OMT_MAL_EUL_PDA AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Poland syndrome 2 = Whole limb excluding Poland syndrome Variable ID: OMT_MAL_EUL_PDA_2_R Variable: Symbrachydactyly classification (Right) Definition: Based on OMT classification, please indicate the type of Symbrachydactyly on the right side Supporting Definition: N/A Inclusion Criteria: If "2 = Symbrachydactyly" to OMT_MAL_EUL_PDA AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Poland syndrome 2 = Whole limb excluding Poland syndrome Variable ID: OMT_MAL_EUL_PDA_3_L Variable: Transverse deficiency (Left) Definition: Based on OMT classification, please indicate the type of Transverse deficiency on the left side Supporting Definition: N/A Inclusion Criteria: If "3 = Transverse deficiency" to OMT_MAL_EUL_PDA AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Amelia 2 = Clavicular/scapular 3 = Humeral 4 = Forearm 5 = Wrist 6 = Metacarpal 7 = Phalangeal Variable ID: OMT_MAL_EUL_PDA_3_R Variable: Transverse deficiency (Right) Definition: Based on OMT classification, please indicate the type of Transverse deficiency on the right side Supporting Definition: N/A Inclusion Criteria: If "3 = Transverse deficiency" to OMT_MAL_EUL_PDA AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Amelia 2 = Clavicular/scapular 3 = Humeral 4 = Forearm DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 17 CASE-MIX VARIABLES 5 = Wrist 6 = Metacarpal 7 = Phalangeal Variable ID: OMT_MAL_EUL_PDA_4_L Variable: Intersegmental deficiency (Left) Definition: Based on OMT classification, please indicate the type of Intersegmental deficiency on the left side Supporting Definition: N/A Inclusion Criteria: If "4 = Intersegmental deficiency" to OMT_MAL_EUL_PDA AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Proximal 2 = Distal 3 = Total Variable ID: OMT_MAL_EUL_PDA_4_R Variable: Intersegmental deficiency (Right) Definition: Based on OMT classification, please indicate the type of Intersegmental deficiency on the right side Supporting Definition: N/A Inclusion Criteria: If "4 = Intersegmental deficiency" to OMT_MAL_EUL_PDA AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Proximal 2 = Distal 3 = Total Variable ID: OMT_MAL_EUL_RUA_L Variable: Radial-ulnar axis classification (Left) Definition: Based on OMT classification, please indicate the type of Radial-ulnar axis malformation on the left side Supporting Definition: N/A Inclusion Criteria: If "2 = Radial-ulnar axis" to OMT_MAL_EUL AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Radial longitudinal deficiency - Thumb hypoplasia 2 = Ulnar longitudinal deficiency 3 = Ulnar dimelia 4 = Radioulnar synostosis 5 = Congenital dislocation of the radial head 6 = Humeroradial synostosis - elbow ankyloses 7 = Madelung deformity Variable ID: OMT_MAL_EUL_RUA_R Variable: Radial-ulnar axis classification (Right) Definition: Based on OMT classification, please indicate the type of Radial-ulnar axis malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "2 = Radial-ulnar axis" to OMT_MAL_EUL AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Radial longitudinal deficiency - Thumb hypoplasia 2 = Ulnar longitudinal deficiency DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 18 CASE-MIX VARIABLES 3 = Ulnar dimelia 4 = Radioulnar synostosis 5 = Congenital dislocation of the radial head 6 = Humeroradial synostosis - elbow ankyloses 7 = Madelung deformity Variable ID: OMT_MAL_EUL_DVA_L Variable: Dorsal-ventral axis classification (Left) Definition: Based on OMT classification, please indicate the type of Dorsal-ventral axis malformation on the left side Supporting Definition: N/A Inclusion Criteria: If "3 = Dorsal-ventral axis" to OMT_MAL AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Ventral dimelia - Furhmann/Al-Awadi/Raas-Rothschild syndromes 2 = Ventral dimelia - Nail Patella syndrome 3 = Absent/hypoplastic extensor/flexor muscles Variable ID: OMT_MAL_EUL_DVA_R Variable: Dorsal-ventral axis classification (Right) Definition: Based on OMT classification, please indicate the type of Dorsal-ventral axis malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "3 = Dorsal-ventral axis" to OMT_MAL AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Ventral dimelia - Furhmann/Al-Awadi/Raas-Rothschild syndromes 2 = Ventral dimelia - Nail Patella syndrome 3 = Absent/hypoplastic extensor/flexor muscles Variable ID: OMT_MAL_EUL_UNS_L Variable: Unspecified axis classification (Left) Definition: Based on OMT classification, please indicate the type of Unspecified malformation on the left side Supporting Definition: N/A Inclusion Criteria: If "4 = Unspecified axis" to OMT_MAL_EUL AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Shoulder - Undescended (Sprengel) 2 = Shoulder - Abnormal shoulder muscles 3 = Shoulder - Not otherwise specified 4 = Arthrogryposis Variable ID: OMT_MAL_EUL_UNS_R Variable: Unspecified axis classification (Right) Definition: Based on OMT classification, please indicate the type of Unspecified malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "4 = Unspecified axis" to OMT_MAL_EUL AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Shoulder - Undescended (Sprengel) 2 = Shoulder - Abnormal shoulder muscles 3 = Shoulder - Not otherwise specified 4 = Arthrogryposis Variable ID: OMT_MAL_HP_L DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 19 CASE-MIX VARIABLES Variable: Hand plate classification (Left) Definition: Based on OMT classification, please indicate the type of abnormal axis formation/difference: Hand Plate on the left side Supporting Definition: N/A Inclusion Criteria: If "2 = Abnormal axis formation/Difference: Hand Plate" to OMT_MAL AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Proximal-distal axis 2 = Radial-ulnar axis 3 = Dorsal-ventral axis 4 = Unspecified axis Variable ID: OMT_MAL_HP_R Variable: Hand plate classification (Right) Definition: Based on OMT classification, please indicate the type of abnormal axis formation/difference: Hand Plate on the right side Supporting Definition: N/A Inclusion Criteria: If "2 = Abnormal axis formation/Difference: Hand Plate" to OMT_MAL AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Proximal-distal axis 2 = Radial-ulnar axis 3 = Dorsal-ventral axis 4 = Unspecified axis Variable ID: OMT_MAL_HP_PDA_L Variable: Proximal-distal axis classification (Left) Definition: Based on OMT classification, please indicate the type of Proximal-distal axis malformation on the left side Supporting Definition: N/A Inclusion Criteria: If "1 = Proximal-distal axis" to OMT_MAL_HP AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Brachydactyly 2 = Symbrachydactyly 3 = Transverse deficiency - Wrist 4 = Transverse deficiency - Metacarpal 5 = Transverse deficiency - Phalangeal Variable ID: OMT_MAL_HP_PDA_R Variable: Proximal-distal axis classification (Right) Definition: Based on OMT classification, please indicate the type of Proximal-distal axis malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "1 = Proximal-distal axis" to OMT_MAL_HP AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Brachydactyly 2 = Symbrachydactyly 3 = Transverse deficiency - Wrist 4 = Transverse deficiency - Metacarpal 5 = Transverse deficiency - Phalangeal DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 20 CASE-MIX VARIABLES Variable ID: OMT_MAL_HP_RUA_L Variable: Radial-ulnar axis classification (Left) Definition: Based on OMT classification, please indicate the type of Radial-ulnar axis malformation on the left side Supporting Definition: N/A Inclusion Criteria: If "2 = Radial-ulnar axis" to OMT_MAL_HP AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Radial deficiency 2 = Ulnar deficiency 3 = Radial polydactyly 4 = Triphalangeal thumb 5 = Ulnar dimelia 6 = Ulnar polydactyly Variable ID: OMT_MAL_HP_RUA_R Variable: Radial-ulnar axis classification (Right) Definition: Based on OMT classification, please indicate the type of Radial-ulnar axis malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "2 = Radial-ulnar axis" to OMT_MAL_HP AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Radial deficiency 2 = Ulnar deficiency 3 = Radial polydactyly 4 = Triphalangeal thumb 5 = Ulnar dimelia 6 = Ulnar polydactyly Variable ID: OMT_MAL_HP_DVA_L Variable: Dorsal-ventral axis classification (Left) Definition: Based on OMT classification, please indicate the type of Dorsal-ventral axis malformation on the left side Supporting Definition: N/A Inclusion Criteria: If "3 = Dorsal-ventral axis" to OMT_MAL_HP AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Dorsal dimelia (palmar nail) 2 = Ventral (palmar) dimelia (including hypoplastic/aplastic nail) Variable ID: OMT_MAL_HP_DVA_R Variable: Dorsal-ventral axis classification (Right) Definition: Based on OMT classification, please indicate the type of Dorsal-ventral axis malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "3 = Dorsal-ventral axis" to OMT_MAL_HP AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Dorsal dimelia (palmar nail) 2 = Ventral (palmar) dimelia (including hypoplastic/aplastic nail) Variable ID: OMT_MAL_HP_UNS_L Variable: Unspecified axis classification (Left) Definition: Based on OMT classification, please indicate the type of Unspecified axis malformation on the left side DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 21 CASE-MIX VARIABLES Supporting Definition: N/A Inclusion Criteria: If "4 = Unspecified axis" to OMT_MAL_HP AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Soft tissue - Syndactyly 2 = Soft tissue - Camptodactyly 3 = Soft tissue - Thumb in palm deformity 4 = Soft tissue - Distal arthrogryposis 5 = Skeletal deficiency - Clinodactyly 6 = Skeletal deficiency - Kirner's deformity 7 = Skeletal deficiency - Synostosis/symphalangism 8 = Complex - Complex syndactyly 9 = Complex - Synpolydactyly - central 10 = Complex - Cleft hand 11 = Complex - Apert hand 12 = Complex - Not otherwise specified Variable ID: OMT_MAL_HP_UNS_R Variable: Unspecified axis classification (Right) Definition: Based on OMT classification, please indicate the type of Unspecified axis malformation on the right side Supporting Definition: N/A Inclusion Criteria: If "4 = Unspecified axis" to OMT_MAL_HP AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Soft tissue - Syndactyly 2 = Soft tissue - Camptodactyly 3 = Soft tissue - Thumb in palm deformity 4 = Soft tissue - Distal arthrogryposis 5 = Skeletal deficiency - Clinodactyly 6 = Skeletal deficiency - Kirner's deformity 7 = Skeletal deficiency - Synostosis/symphalangism 8 = Complex - Complex syndactyly 9 = Complex - Synpolydactyly - central 10 = Complex - Cleft hand 11 = Complex - Apert hand 12 = Complex - Not otherwise specified Variable ID: OMT_DEF_L Variable: Deformation classification (Left) Definition: Based on OMT classification, please indicate the type of deformation on the left side Supporting Definition: N/A Inclusion Criteria: If answer "2 = Deformation" to OMT AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Constriction ring sequence 2 = Trigger digits 3 = Not otherwise specified Variable ID: OMT_DEF_R Variable: Deformation classification (Right) Definition: Based on OMT classification, please indicate the type of deformation on the right side Supporting Definition: N/A Inclusion Criteria: If "2 = Deformation" to OMT AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 22 CASE-MIX VARIABLES Data Source: Clinical Type: Single answer Response Options: 1 = Constriction ring sequence 2 = Trigger digits 3 = Not otherwise specified Variable ID: OMT_DYS_L Variable: Dysplasia classification (Left) Definition: Based on OMT classification, please indicate the type of dysplasia on the left side Supporting Definition: N/A Inclusion Criteria: If "3 = Dysplasia" to OMT AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Hypertrophy 2 = Tumorous conditions Variable ID: OMT_DYS_R Variable: Dysplasia classification (Right) Definition: Based on OMT classification, please indicate the type of dysplasia on the right side Supporting Definition: N/A Inclusion Criteria: If "3 = Dysplasia" to OMT AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Hypertrophy 2 = Tumorous conditions Variable ID: OMT_DYS_HYP_L Variable: Hypertrophy classification (Left) Definition: Based on OMT classification, please indicate the Hypertrophy on the left side Supporting Definition: N/A Inclusion Criteria: If "1 = Hypertrophy" to OMT_DYS AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Whole limb - Hemihypertrophy 2 = Whole limb - Aberrant flexor/extensor/intrinsic muscles 3 = Partial limb - Macrodactyly 4 = Partial limb - Aberrant intrinsic muscles of hand Variable ID: OMT_DYS_HYP_R Variable: Hypertrophy classification (Right) Definition: Based on OMT classification, please indicate the Hypertrophy on the right side Supporting Definition: N/A Inclusion Criteria: If "1 = Hypertrophy" to OMT_DYS AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Whole limb - Hemihypertrophy 2 = Whole limb - Aberrant flexor/extensor/intrinsic muscles 3 = Partial limb - Macrodactyly 4 = Partial limb - Aberrant intrinsic muscles of hand Variable ID: OMT_DYS_TUM_L Variable: Tumourous conditions (Left) Definition: Based on OMT classification, please indicate the type of Tumourous conditions on the left side Supporting Definition: N/A Inclusion Criteria: If "2 = Tumourous conditions" to OMT_DYS AND "1 = Left" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 23 CASE-MIX VARIABLES Type: Single answer Response Options: 1 = Vascular - Hemangioma 2 = Vascular - Malformation 3 = Vascular - Others 4 = Neurological - Neurofibromatosis 5 = Neurological - Others 6 = Connective tissue - Juvenile aponeurotic fibroma 7 = Connective tissue - Infantile digital fibroma 8 = Connective tissue - Others Variable ID: OMT_DYS_TUM_R Variable: Tumourous conditions (Right) Definition: Based on OMT classification, please indicate the type of Tumourous conditions on the right side Supporting Definition: N/A Inclusion Criteria: If "2 = Tumourous conditions" to OMT_DYS AND "2 = Right" or "3 = Both" to AFSIDE Timing: On referral Data Source: Clinical Type: Single answer Response Options: 1 = Vascular - Hemangioma 2 = Vascular - Malformation 3 = Vascular - Others 4 = Neurological - Neurofibromatosis 5 = Neurological - Others 6 = Connective tissue - Juvenile aponeurotic fibroma 7 = Connective tissue - Infantile digital fibroma 8 = Connective tissue - Others Variable ID: APERT Variable: Apert Diagnosis Definition: Indicate whether the patient has Apert Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: SUBAPERT Variable: Sub-classification of Apert Definition: Indicate the classification of Apert Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to APERT Timing: On referral Data Source: Clinical Type: Numerical Response Options: 1 = Type I 2 = Type II 3 = Type III Variable ID: CONRING Variable: Constriction Ring Diagnosis Definition: Indicate whether the patient has Constriction Ring Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: SUBCONRING DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 24 CASE-MIX VARIABLES Variable: Sub-classification of Constriction Ring Definition: Indicate the classification of Constriction Ring Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to CONRING Timing: On referral Data Source: Clinical Type: Numerical Response Options: 1 = Type I 2 = Type II 3 = Type III 4 = Type IV Variable ID: POLYDACT Variable: Polydactyly Diagnosis Definition: Indicate whether the patient has Polydactyly Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: SUBPOLYDACT Variable: Sub-classification of Polydactyly Definition: Indicate the classification of Polydactlyly Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to POLYDACT Timing: On referral Data Source: Clinical Type: Numerical Response Options: 1 = Type I 2 = Type II 3 = Type III 4 = Type IV 5 = Type V 6 = Type VI 7 = Type VII 8 = Type VIII Variable ID: ULNDYS Variable: Ulnar Dysplasia Diagnosis Definition: Indicate whether the patient has Ulnar Dysplasia Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: SUBULNDYS Variable: Sub-classification of Ulnar Dysplasia Definition: Indicate the classification of Ulnar Dysplasia Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to ULNDYS Timing: On referral Data Source: Clinical Type: Numerical Response Options: Numerical value Variable ID: THUMBHYP Variable: Thumb Hypoplasia Diagnosis Definition: Indicate whether the patient has Thumb Hypoplasia DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 25 CASE-MIX VARIABLES Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: SUBTHUMBHYP Variable: Sub-classification of Thumb Hypoplasia Definition: Indicate the classification of Thumb Hypoplasia Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to THUMBHYP Timing: On referral Data Source: Clinical Type: Numerical Response Options: 1 = Type I 2 = Type II 3 = Type III 4 = Type IV 5 = Type V Variable ID: RADRAYDEF Variable: Radial Ray Deficiency Diagnosis Definition: Indicate whether the patient has Radial Ray Deficiency Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: SUBRADRAYDEF Variable: Sub-classification of Radial Ray Deficiency Definition: Indicate the classification of Radial Ray Deficiency Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to RADRAYDEF Timing: On referral Data Source: Clinical Type: Numerical Response Options: 1 = Type I 2 = Type II 3 = Type III 4 = Type IV Variable ID: SYMBRA Variable: Symbrachydactyly Diagnosis Definition: Indicate whether the patient has Symbrachydactyly Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: SUBSYMBRA Variable: Sub-classification of Symbrachydactyly Definition: Indicate the classification of Symbrachydactyly Supporting Definition: N/A Inclusion Criteria: If "1 = Yes" to SYMBRA Timing: On referral Data Source: Clinical Type: Numerical DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 26 CASE-MIX VARIABLES Response Options: 1 = Type I 2 = Type II 3 = Type III 4 = Type IV Variable ID: CLEFT Variable: Cleft Hand Diagnosis Definition: Indicate whether the patient has Cleft Hand Supporting Definition: N/A Inclusion Criteria: All patients Timing: On referral Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: SUBCLEFT Variable: Sub-classification of Cleft Hand Definition: Indicate the classification of Cleft Hand Supporting Definition: N/A Inclusion Criteria: If If "1 = Yes" to CLEFT Timing: On referral Data Source: Clinical Type: Numerical Response Options: 1 = Type I 2 = Type II 3 = Type III

Treatment Variable ID: INTERVENTIONTYPE Variable: Intervention type Definition: Indicate intervention type Supporting Definition: N/A Inclusion Criteria: All patients Timing: Ongoing Data Source: Clinical Type: Single answer Response Options: 1 = Amputation 2 = Anlage Excision 3 = Arthrodesis 4 = Correction/rotational osteotomy 5 = Direct closure of constriction rings 6 = Debulking surgery 7 = Free phalangeal transfer 8 = joint contraction release 9 = Pollicisation 10 = Radialisation 11 = Serial casting 12 = Splinting therapy 13 = Syndactyly separation and web space widening 14 = Tendon transfer 15 = Toe to Hand transfer 16 = Vascularised joint transfer 17 = Cryoblation 18 = Embolisation 19 = Endovascular laser treatment 20 = Rehabilitation 21 = Sclerotherapy 22 = Other Variable ID: INTERVENTIONDATE Variable: Date of intervention Definition: Indicate the date of intervention Supporting Definition: N/A Inclusion Criteria: All patients Timing: Ongoing Data Source: Clinical Type: Date by DD/MM/YYYY Response Options: DD/MM/YYYY Outcomes Burden of Care to Patient Variable ID: POSTINTCOMP Variable: Post-intervention complications Definition: Indicate if the patient experienced any of the following complications Supporting Definition: Select all that apply:

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 27 OUTCOMES - Bleeding requiring return to Operating Room: Active bleeding requiring operative re-exploration to establish haemostasis; or a hematoma of sufficient size to require evacuation and washout in the operating room. - Bleeding requiring transfusion: Bleeding sufficient to cause hemodynamic stress or appreciable drop in Hgb. / Hct., requiring transfusion of blood for treatment. - Cellulitis: Infection of the deep dermis and subcutaneous tissue, presenting with expanding erythema, warmth, tenderness, and swelling. Oral or parenteral antibiotic therapy is required. - Abscess: Infection of subcutaneous or deeper tissues, with an enclosed collection of liquefied tissue (pus). Requires drainage, local wound care, and oral or parenteral antibiotic therapy. - Material major: Pin severe infection: Severe soft tissue infection involving several pins ± pin loosening, osteolysis. Ex. Fix. must be discontinued, debridement and IV antibiotics are required / severe soft tissue infection, osteomyelitis or exposure of any implanted material, requiring intravenous antibiotics and additional unplanned operative procedures - Complete dehiscence: All layers of the wound thickness are separated, revealing the underlying tissue. - Skin graft or flap necrosis: Complication that results in the death of the skin tissue. - Hypertrophic or Keloid scars: Keloid scars, which extend beyond the original defect/scar and persist for many years. Hypertrophic scars, remain confined to the initial defect/scar and tend to improve with time. - Drug adverse reaction: Undesirable experience associated with the use of a drug in a patient1 during the perioperative period or hospitalisation due to CULA- related condition. - Death: Loss of life from any cause. Death within the postoperative period should be specially designated, and cause of death should be specified. Inclusion Criteria: All patients Timing: Updated 6 months after first intervention Data Source: Clinical Type: Multiple answer Response Options: 1 = Bleeding requiring return to Operating Room 2 = Bleeding requiring transfusion 3 = Cellulitis 4 = Abscess 5 = Material major infection 6 = Complete Dehiscence 7 = Skin graft or flap necrosis 8 = Hypertrophic or Keloid scars 9 = Drug adverse reaction 10 = Death Variable ID: CLINAPPT Variable: Number of hospital appointments Definition: Number of appointments with the clinical team (e.g. hospital, rehabilitation) for management of CULA Supporting Definition: N/A Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value Variable ID: STAYLENGTH Variable: Length of hospital stay Definition: Time spent in hospital from date of admission to date of discharge (days) Supporting Definition: N/A Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value Variable ID: REHAB Variable: Length of post-operative rehabilitation DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 28 OUTCOMES Definition: Length of postoperative rehabilitation from date of surgery to date of discharge (days) Supporting Definition: N/A Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value Variable ID: READ Variable: Hospital readmissions Definition: Number of unplanned 30-day hospital readmissions after the first reconstructive surgery for CULA Supporting Definition: N/A Inclusion Criteria: All patients Timing: Ongoing Data Source: Administrative Type: Numerical Response Options: Numerical value

Degree of Health Variable ID: CLINEVAL -Pincer grasp_L Variable: Pincer grasp (Left) Definition: The child is able to use the pincer grasp on the left side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL -Pincer grasp_R Variable: Pincer grasp (Right) Definition: The child is able to use the pincer grasp on the right side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Lateral Pincer grasp_L Variable: Lateral pincer grasp (Left) Definition: The child is able to use the lateral pincer grasp on the left side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Lateral Pincer grasp_R Variable: Lateral pincer grasp (Right) Definition: The child is able to use the lateral pincer grasp on the right side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Tripod pinch_L

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 29 OUTCOMES Variable: Tripod pinch (Left) Definition: The child is able to use the tripod pinch on the left side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Tripod pinch_R Variable: Tripod pinch (Right) Definition: The child is able to use the tripod pinchon the right side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Open hand_L Variable: Open hand (Left) Definition: The child is able to open their hand completely on the left side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Open hand_R Variable: Open hand (Right) Definition: The child is able to open their hand completely on the right side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Fist_L Variable: Fist (Left) Definition: The child is able to make a full fist on the left side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Fist_R Variable: Fist (Right) Definition: The child is able to make a full fist on the right side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Pickup-objects_L Variable: Pick up small objects (Left) Definition: The child is able to pick up small objects, the size of a pea, with the tips of their thumb & fingers on the left side DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 30 OUTCOMES Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Pickup-objects_R Variable: Pick up small objects (Right) Definition: The child is able to pick up small objects, the size of a pea, with the tips of their thumb & fingers on the right side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Toy-Hand_L Variable: Pick up small toy with hand (Left) Definition: The child is able to pick up a small toy with one hand on the left side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Toy-Hand_R Variable: Pick up small toy with hand (Right) Definition: The child is able to pick up a small toy with one hand on the right side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Toy-Thumb_L Variable: Pick up small toy with thumb and fingers (Left) Definition: The child is able to pick up a small toy with the tips of their thumb and fingers on the left side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: CLINEVAL-Toy-Thumb_R Variable: Pick up small toy with thumb and fingers (Right) Definition: The child is able to pick up a small toy with the tips of their thumb and fingers on the right side Supporting Definition: N/A Inclusion Criteria: 6 months - age 2 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6M, 1Y, 2Y Data Source: Clinical Type: Single answer Response Options: 0 = No 1 = yes Variable ID: MMST_LD_L Variable: Manual Muscle Strength Testing - Latissimus Dorsi (Left) Definition: Indicate the grade achieved on the left side DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 31 OUTCOMES Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_LD_R Variable: Manual Muscle Strength Testing - Latissimus Dorsi (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_PM_L Variable: Manual Muscle Strength Testing - Pectoralis Major (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_PM_R Variable: Manual Muscle Strength Testing - Pectoralis Major (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_BB_L Variable: Manual Muscle Strength Testing - Biceps Brachii (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_BB_R Variable: Manual Muscle Strength Testing - Biceps Brachii (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 32 OUTCOMES Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_TB_L Variable: Manual Muscle Strength Testing - Triceps Brachii (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_TB_R Variable: Manual Muscle Strength Testing - Triceps Brachii (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_BRAR_L Variable: Manual Muscle Strength Testing - Brachioradialis (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_BRAR_R Variable: Manual Muscle Strength Testing - Brachioradialis (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_BRAC_L Variable: Manual Muscle Strength Testing - Brachialis (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 33 OUTCOMES Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_BRAC_R Variable: Manual Muscle Strength Testing - Brachialis (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FCU_L Variable: Manual Muscle Strength Testing - Flexor Carpi Ulnaris (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FCU_R Variable: Manual Muscle Strength Testing - Flexor Carpi Ulnaris (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FCR_L Variable: Manual Muscle Strength Testing - Flexor Carpi Radialis (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FCR_R Variable: Manual Muscle Strength Testing - Flexor Carpi Radialis (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 34 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDP_II_L Variable: Manual Muscle Strength Testing - Flexor Digitorum Profundus II (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDP_II_R Variable: Manual Muscle Strength Testing - Flexor Digitorum Profundus II (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDP_III_L Variable: Manual Muscle Strength Testing - Flexor Digitorum Profundus III (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDP_III_R Variable: Manual Muscle Strength Testing - Flexor Digitorum Profundus III (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDP_IV_L Variable: Manual Muscle Strength Testing - Flexor Digitorum Profundus IV (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 35 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDP_IV_R Variable: Manual Muscle Strength Testing - Flexor Digitorum Profundus IV (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDP_V_L Variable: Manual Muscle Strength Testing - Flexor Digitorum Profundus V (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDP_V_R Variable: Manual Muscle Strength Testing - Flexor Digitorum Profundus V (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDS_II_L Variable: Manual Muscle Strength Testing - Flecor Digitorum Superficialis II (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDS_II_R Variable: Manual Muscle Strength Testing - Flecor Digitorum Superficialis II (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 36 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDS_III_L Variable: Manual Muscle Strength Testing - Flecor Digitorum Superficialis III (Left) Definition: Indicate the grade achievedon the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDS_III_R Variable: Manual Muscle Strength Testing - Flecor Digitorum Superficialis III (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDS_IV_L Variable: Manual Muscle Strength Testing - Flecor Digitorum Superficialis IV (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDS_IV_R Variable: Manual Muscle Strength Testing - Flecor Digitorum Superficialis IV (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDS_V_L Variable: Manual Muscle Strength Testing - Flecor Digitorum Superficialis V (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 37 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FDS_V_R Variable: Manual Muscle Strength Testing - Flecor Digitorum Superficialis V (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FPL_L Variable: Manual Muscle Strength Testing - Flexor Pollicis Longus (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FPL_R Variable: Manual Muscle Strength Testing - Flexor Pollicis Longus (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FPB_L Variable: Manual Muscle Strength Testing - Flexor Pollicis Brevis (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_FPB_R Variable: Manual Muscle Strength Testing - Flexor Pollicis Brevis (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 38 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ECU_L Variable: Manual Muscle Strength Testing - Extensor Carpi Ulnaris (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ECU_R Variable: Manual Muscle Strength Testing - Extensor Carpi Ulnaris (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ECRL_L Variable: Manual Muscle Strength Testing - Extensor Carpi Radialis Longus (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ECRL_R Variable: Manual Muscle Strength Testing - Extensor Carpi Radialis Longus (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ECRB_L Variable: Manual Muscle Strength Testing - Extensor Carpi Radialis Brevis (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 39 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ECRB_R Variable: Manual Muscle Strength Testing - Extensor Carpi Radialis Brevis Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ED_II_L Variable: Manual Muscle Strength Testing - Extensor Digitorum II (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ED_II_R Variable: Manual Muscle Strength Testing - Extensor Digitorum II (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ED_III_L Variable: Manual Muscle Strength Testing - Extensor Digitorum III (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ED_III_R Variable: Manual Muscle Strength Testing - Extensor Digitorum III (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 40 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ED_IV_L Variable: Manual Muscle Strength Testing - Extensor Digitorum IV (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ED_IV_R Variable: Manual Muscle Strength Testing - Extensor Digitorum IV (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ED_V_L Variable: Manual Muscle Strength Testing - Extensor Digitorum V (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ED_V_R Variable: Manual Muscle Strength Testing - Extensor Digitorum V (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ID_I_L Variable: Manual Muscle Strength Testing - Interossei Dorsales I (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 41 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ID_I_R Variable: Manual Muscle Strength Testing - Interossei Dorsales I (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ID_II_L Variable: Manual Muscle Strength Testing - Interossei Dorsales II (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ID_II_R Variable: Manual Muscle Strength Testing - Interossei Dorsales II (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ID_III_L Variable: Manual Muscle Strength Testing - Interossei Dorsales III (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ID_III_R Variable: Manual Muscle Strength Testing - Interossei Dorsales III (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 42 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ID_IV_L Variable: Manual Muscle Strength Testing - Interossei Dorsales IV (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_ID_IV_R Variable: Manual Muscle Strength Testing - Interossei Dorsales IV (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_OP_L Variable: Manual Muscle Strength Testing - Opponens pollicis (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_OP_R Variable: Manual Muscle Strength Testing - Opponens pollicis (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_APL_L Variable: Manual Muscle Strength Testing - Adductor Pollicis Longus (Left) Definition: Indicate the grade achievedon the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 43 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_APL_R Variable: Manual Muscle Strength Testing - Adductor Pollicis Longus Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_APB_L Variable: Manual Muscle Strength Testing - Adductor Pollicis Brevis (Left) Definition: Indicate the grade achievedon the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_APB_R Variable: Manual Muscle Strength Testing - Adductor Pollicis Brevis (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_AP_L Variable: Manual Muscle Strength Testing - Adductor Pollicis (Left) Definition: Indicate the grade achieved on the left side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "1 = Left" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: MMST_AP_R Variable: Manual Muscle Strength Testing - Adductor Pollicis (Right) Definition: Indicate the grade achieved on the right side Supporting Definition: 6-level Medical Research Council grading Inclusion Criteria: Age 6-18 AND "2 = Right" or "3 = Both" to AFSIDE Timing: 6Y & EOC Data Source: Clinical Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 44 OUTCOMES Response Options: 0 = Complete paralysis 1 = Muscle flicker 2 = Decreased range of motion 3 = Full range of motion; no resistance 4 = Full range of motion; some resistance 5 = Full range of motion; full resistance 888 = Other (not applicable) Variable ID: GONIO Variable: Joint range of motion Definition: Indicate the degrees achieved Supporting Definition: N/A Inclusion Criteria: Age 1-18 Timing: 1Y, 2Y, 6Y, EOC Data Source: Clinical Type: Numerical Response Options: Numerical value Variable ID: DYNA Variable: Tip-tip pinch strength left Definition: Indicate the result achieved Supporting Definition: Measure in kg Inclusion Criteria: Age 6-18 Timing: 6Y & EOC Data Source: Clinical Type: Numerical Response Options: Numerical value Variable ID: DYNA_PR Variable: Tip-tip pinch strength right Definition: Indicate the result achieved Supporting Definition: Measure in kg Inclusion Criteria: Age 6-18 Timing: 6Y & EOC Data Source: Clinical Type: Numerical Response Options: Numerical value Variable ID: DYNA_PSL Variable: Key pinch strength left Definition: Indicate the result achieved Supporting Definition: Measure in kg Inclusion Criteria: Age 6-18 Timing: 6Y & EOC Data Source: Clinical Type: Numerical Response Options: Numerical value Variable ID: DYNA_FSR Variable: Force strength right Definition: Indicate the result achieved Supporting Definition: Measure in kg Inclusion Criteria: Age 6-18 Timing: 6Y & EOC Data Source: Clinical Type: Numerical Response Options: Numerical value Variable ID: DYNA_GSL Variable: Grip strength left Definition: Indicate the result achieved Supporting Definition: Measure in kg Inclusion Criteria: Age 6-18 Timing: 6Y & EOC Data Source: Clinical Type: Numerical Response Options: Numerical value

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 45 OUTCOMES Variable ID: DYNA_GSR Variable: Grip strength right Definition: Indicate the result achieved Supporting Definition: Measure in kg Inclusion Criteria: Age 6-18 Timing: 6Y & EOC Data Source: Clinical Type: Numerical Response Options: Numerical value Variable ID: PROMIS-UE_Q01 Variable: Paediatric Physical Function - Upper Extremity Short Form - question 3880R2 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-UE_Q02 Variable: Paediatric Physical Function - Upper Extremity Short Form - question 2671R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-UE_Q03 Variable: Paediatric Physical Function - Upper Extremity Short Form - question 4143R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-UE_Q04 Variable: Paediatric Physical Function - Upper Extremity Short Form - question 4112R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-UE_Q05 Variable: Paediatric Physical Function - Upper Extremity Short Form - question 3881R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 46 Data Source: Patient-reported OUTCOMES Type: Single answer Variable ID: PROMIS-UE_Q06 Variable: Paediatric Physical Function - Upper Extremity Short Form - question 4130R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-UE_Q07 Variable: Paediatric Physical Function - Upper Extremity Short Form - question 26757bR1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-UE_Q08 Variable: Paediatric Physical Function - Upper Extremity Short Form - question 4109R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: AESTHETIC_Q01 Variable: Overall Aesthetics Definition: What is your overall assessment of the appearance of your hand? Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Response Options: 5 = Excellent 4 = Very good 3 = Good 2 = Fair 1 = Poor Variable ID: AESTHETIC_Q02 Variable: Psychosocial Definition: Do you care about what others think of your hand appearance? Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Response Options: 5 = Always 4 = Often 3 = Sometimes 2 = Rarely 1 = Never Variable ID: AESTHETIC_Q03 Variable: Expectations Definition: Do you believe the appearance of your hand could be better? DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 47 OUTCOMES Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Response Options: 3 = Extremely 2 = Somewhat 1 = Not at all Variable ID: AESTHETIC_Q04 Variable: Symmetry Definition: Do you think your hands look asymmetrical? Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Response Options: 3 = Extremely 2 = Somewhat 1 = Not at all Variable ID: AESTHETIC_Q05 Variable: Disease/Intervention Definition: How has your intervention affected the appearance of your hands? Supporting Definition: N/A Inclusion Criteria: Age 6-18 Timing: 6Y, 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Response Options: 3 = Extremely 2 = Somewhat 1 = Not at all Variable ID: PROMIS-CPGH7_Q01 Variable: CPaedGlobal01 - Patient reported general health status Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-CPGH7_Q02 Variable: CPaedGlobal02 - Global patient reported health-related QOL Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-CPGH7_Q03 Variable: CPaedGlobal03 - Patient reported general health status Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-CPGH7_Q04 Variable: CPaedGlobal04 - Mood, global cognitive function

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 48 OUTCOMES Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-CPGH7_Q05 Variable: CPaedGlobal05 - Sad Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-CPGH7_Q06 Variable: CPaedGlobal06 - Fun with friends Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-CPGH7_Q07 Variable: CPaedGlobal07 - Parents listen to ideas Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PPGH7_Q01 Variable: PPaedGlobal01 - General health Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported Type: Single answer Variable ID: PROMIS-PPGH7_Q02 Variable: PPaedGlobal02 - Quality of life Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 49 OUTCOMES Type: Single answer Variable ID: PROMIS-PPGH7_Q03 Variable: PPaedGlobal03 - Physical health Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported Type: Single answer Variable ID: PROMIS-PPGH7_Q04 Variable: PPaedGlobal04 - Mental health Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported Type: Single answer Variable ID: PROMIS-PPGH7_Q05 Variable: PPaedGlobal05 - Sad Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported Type: Single answer Variable ID: PROMIS-PPGH7_Q06 Variable: PPaedGlobal06 - Fun with friends Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported Type: Single answer Variable ID: PROMIS-PPGH7_Q07 Variable: PPaedGlobal07 - Parents listen to ideas Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 6-17 (if the patient is unable to respond to PROMIS CPGH7) Timing: 6Y, 8Y, 12Y, 15Y, EOC if <18 Data Source: Parent-reported Type: Single answer Variable ID: PROMIS-10_Q01 Variable: Global01 - Patient reported general health status Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 50 OUTCOMES Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q02 Variable: Global02 - Global patient reported health-related QOL Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q03 Variable: Global03 - Patient reported general health status Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q04 Variable: Global04 - Mood, global cognitive function Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q05 Variable: Global05 - Social participation Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q06 Variable: Global09 - Social participation Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q07 Variable: Global06 - Mobility

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 51 OUTCOMES Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q08 Variable: Global10 - Mood Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q09 Variable: Global08 - Fatigue Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-10_Q10 Variable: Global07 - Pain and other unpleasant sensations Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Inclusion Criteria: Age 18 Timing: 18Y Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PEER_Q01 Variable: Pediatric Peer Relationships Short Form 8a - q5018R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PEER_Q02 Variable: Pediatric Peer Relationships Short Form 8a - q5058R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 52 OUTCOMES Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PEER_Q03 Variable: Pediatric Peer Relationships Short Form 8a - q5056R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PEER_Q04 Variable: Pediatric Peer Relationships Short Form 8a - q1147R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PEER_Q05 Variable: Pediatric Peer Relationships Short Form 8a - q5055R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PEER_Q06 Variable: Pediatric Peer Relationships Short Form 8a - q233R2 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PEER_Q07 Variable: Pediatric Peer Relationships Short Form 8a - q210R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-PEER_Q08 Variable: Pediatric Peer Relationships Short Form 8a - q9020R1

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 53 OUTCOMES Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-ANX_Q01 Variable: Pediatric Anxiety Short Form 8b - q2220R2 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-ANX_Q02 Variable: Pediatric Anxiety Short Form 8b - q713R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-ANX_Q03 Variable: Pediatric Anxiety Short Form 8b - q227bR1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-ANX_Q04 Variable: Pediatric Anxiety Short Form 8b - q5044R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-ANX_Q05 Variable: Pediatric Anxiety Short Form 8b - q3459bR1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 54 OUTCOMES Type: Single answer Variable ID: PROMIS-ANX_Q06 Variable: Pediatric Anxiety Short Form 8b - q2230R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-ANX_Q07 Variable: Pediatric Anxiety Short Form 8b - q231R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-ANX_Q08 Variable: Pediatric Anxiety Short Form 8b - q3150bR2 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-DEP_Q01 Variable: Pediatric Depressive Symptoms Short Form 8b - q488R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-DEP_Q02 Variable: Pediatric Depressive Symptoms Short Form 8b - q461R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-DEP_Q03 Variable: Pediatric Depressive Symptoms Short Form 8b - q5041R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 55 OUTCOMES Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-DEP_Q04 Variable: Pediatric Depressive Symptoms Short Form 8b - q5035R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-DEP_Q05 Variable: Pediatric Depressive Symptoms Short Form 8b - q711R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-DEP_Q06 Variable: Pediatric Depressive Symptoms Short Form 8b - q228R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-DEP_Q07 Variable: Pediatric Depressive Symptoms Short Form 8b - q712R1 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer Variable ID: PROMIS-DEP_Q08 Variable: Pediatric Depressive Symptoms Short Form 8b - q3952aR2 Definition: Please contact license holder for the questionnaire. If you wish to participate in the ICHOM benchmarking program and have secured a licence to use the tool, ICHOM will provide you with the technical specifications on how to collect the data. Supporting Definition: N/A Inclusion Criteria: Age 8-18 Timing: 8Y, 12Y, 15Y, EOC Data Source: Patient-reported Type: Single answer

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 56 Working Group Member Conflicts of Interest At the beginning of the Working Group process, we ask all Working Group members to declare any conflicts of interest they have. We then circulate these within the Group to ensure transparency. Name Title Declarations

Bran Sivakumar Consultant Plastic Surgeon None declared

Christianne van Nieuwenhoven Consultant Plastic Surgeon None declared

Monique Ardon Hand Therapist None declared

Jason Arora Director of Standardisation None declared

Alethse De la Torre Project Leader None declared

Amir Taghinia Attending Surgeon None declared

Amy Lake Occupational Therapist, Certified Hand Therapist None declared

Andrea Jester Consultant Plastic Surgeon None declared

Anna Gerber Ekblom Head of Specialist Care None declared

Brian Labow Associate Professor of Surgery None declared

Charles Goldfarb Hand and Wrist Surgeon None declared

David McCombe Consultant Surgeon None declared

Donald Bae Associate Professor of Orthopedic Surgery None declared

Kerby Oberg Professor Department of Pathology and Human Anatomy None declared

Kristen Davidge Staff Surgeon None declared

Lesley Butler Senior Clinical Research Coordinator None declared

Liselotte Hermansson Associate professor of Occupational Therapy None declared

Chairman of Department of Plastic Surgery, Hand and Raja Sabapathy Microsurgery and Burns None declared

Richard Lawson Orthopaedic Hand Surgeon None declared

Scott Oishi Director None declared

Tracy Fairplay Physiotherapist None declared

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 57 Reference Guide Revisions

Reference Guide Version Location within Reference Guide Content Change

DATA COLLECTION REFERENCE GUIDE CONGENITAL UPPER LIMB ANOMALIES | 58 www.ichom.org

DATA COLLECTION USERREFERENCE MANUAL GUIDE CONGENITALCORONARY UPPER LIMB ARTERY ANOMALIES DISEASE | 59