NORWEGIAN CEREBRAL PALSY REGISTRY
National medical quality registry
First time registration To be filled out by CPRN 1. Form number
2. Parental consent 1 Yes
3. Birthdate & identification number (11 digits)
4. Date of present clinical examination: (8 digits) REGIST_DA
5. Born in Norway 1 Yes 2 No 0 Unknown BORN_N
6. County of residence BO-FYLKE 7. Growth Hight
8. Sex SEX 1 Male 2 Female Weight
9. Diagnosis SCPE ICD 10 CP_DX Spastic Unilateral Hemiplegia, right G 80.2 1
Hemiplegia, left 2 G 80.2
Bilateral Diplegia 3 G 80.1
Quadriplegia 4 G 80.0
Dyskinetic Choreoathetosis 5 G 80.3
Dystonia 6 G 80.3
G 80.4 Ataxia 7
Not yet classified CP 8 G 80.9
10. Gestational age at birth months 11. Birth weight grams BW
12. Length of pregnancy full weeks
13. Multiple births 2 No 1 Yes Number Birth order 0 Unknown
14. Was the child admitted to the neonatal ward? 1 Yes 2 No 0 Unknown
15. Was the child ventilated? 1 Yes 2 No 0 Unknown
16. Did the child have convulsions during the first 72 hours? 1 Yes 2 No 0 Unknown EPILEPSIA 17. Did the child have > 2 unprovoked seizures during the postneonatal period? 1 Yes 2 No 0 Unknown
18. Does the child use antiepileptic drugs? 1 Yes 2 No 0 Unknown
19. Does the child have difficulty eating? 1 Yes 2 No 0 Unknown First time registration page 2
20. Interaction with child: SAM_SPILL 21. Language understanding:
Yes No Yes No Shared focus on play Understands single words 11 12 11 12
Visual tracking of toys 21 22 Understands simple sentences 21 22
31 32 Give/take play, taking turns 31 32 Understands complex sentences
22. Speech development: 23. Does the child have oculomotor difficulties? Yes No Yes No 11 Strabismus 31 Lack of eye contact Sounds 11 12 Babbling 21 22
21 Nystagmus Words 31 32 Sentences 41 42
2 No 0 Unknown
24. Does the child have congenital anomalies? 27. Does the child have associated syndromes?
1 Yes 2 No 0 Unknown 1 Yes 2 No 0 Unknown SYNDR 25. What is the ICD-10 code of the anomaly / 28. What is the ICD-10 code of the syndrome? anomalies?
29. What is the text diagnosis of the syndrome? 26. What is the text diagnosis of the anomaly / anomalies
30. Does the child have a brain malformation? 31. What is the ICD-10 code of the brain malformation?
1 Yes 2 No 0 Unknown
32. What is the text diagnosis of theCONGENIT_COD brain malformation?
MR
33. Comments First time registration page 3
QUESTIONS 34-38 CONCERN CEREBRAL MRI
34. Has a cerebral MRI 1 Yes 2 No 0 Unknown 35. Age at MRI? months been performed?
36. Main morphological findings (pathology)
Yes Yes Yes White matter injury or Focal cortical lesion Diffuse cortical lesions immaturity (PVL, PVH, etc.) 11 21 31
Basal ganglia pathology 41 Malformation 51 Normal findings 61
37. Lesion localisation
(N.B.! Mark only (1) box!) Yes
Bilateral lesions 11
Lesion localised on right side, or largest on right side 21
Lesion localised on left side, or largest on left side 31
38. Other findings (More than one mark permitted)
Cerebellum 3 Normal 4 Pathological
Corpus callosum 5 Normal 6 Pathological
Signs of infection (Ca++) 101 Yes 102 No
Form filled out by:
Name:
Position: Institution:
Date: Place:
In cooperation with: Medical Birth Registry, The Norwegian Institute of Public Health, The Norwegian University of Science and Technology (NTNU), The Cerebral Palsy Follow-up Program (CPOP) Project, Norwegian Cerebral Palsy Association.
Return address: Barnenevrologisk seksjon, Rikshospitalet, 002t7 Oslo First time registration page 4
DECISION TREE CLASSIFICATION TREE for identifying cerebral palsy for sub-types of cerebral palsy
Does the child have a disorder of move- ment or posture of central origin? Is there persisting increased muscle tone in one or more limbs?
Yes No EXCLUDE
Yes No, generalised hypotonia with Does the child have a disorder of signs of ataxia motor function? No, tone varying
Yes No EXCLUDE Ataxic CP (4) Are both sides of the body involved? Dyskinetic CP (3) Is the condition progressive (loss of previously acquired skills)? Yes No
No Yes EXCLUDE Spastic increased
unilateral(2) decreasedd Reduced activity Increased activity - tone tends to be Does the child have a syndrom / - tone tends to be brain anomaly or chromosome abnormality? Spastic Does the child have bilateral (1) Yes No generalised hypotonia?
Recheck - Yes No Does the child meet Choreo- Left the criteria for the Right Dystonic CP (3a) Diplegia athetotic CP (3a) hemiplegia definition of CP? hemiplegia Quadriplegia Are there No Yes signs of Definitions of cerebral palsy types ataxia? Spastic Cerebral Palsy is characterised by at least two of: • Abnormal pattern of posture and/or movement • Increased tone (not necessarily constantly) EXCLUDE • Pathological reflexes (hyper-reflexia or pyramidal signs e.g. Babinski response)
INCLUDE Both sides of the body involved = 1. Spastisk bilateral CP Yes No One side of body involved = 2. Spastisk unilateral CP
Identify sub-type of CP 3. Dyskinesic Cerebral Palsy is characterised by both of: • Involuntary, uncontrolled, recurring, occasionally stereotyped movements of affected body parts • Involuntary, uncontrolled, recurring, occasionally stereotyped movements of INCLUDE affected body parts EXCLUDE Ataktic CP 3a. Dystonic Cerebral Palsy, dominated by both: o Hypokinesia o Hypertonia 3b. Choreo-athetotic Cerebral Palsy, dominated by both hyperkinesia and hypotonia 4. Ataxic Cerebral Palsy is characterised by both of: • Abnormal pattern of posture and/or movement • Loss of orderly muscular co-ordination, so that movements are performed with abnormal force, rhythm and accuracy
Surveillance of cerebral palsy in Europe: A collaboration of cerebral palsy surveys Surveillance of cerebral palsy in Europe: A collaboration of cerebral and registers. Dev Med Child Neuro. 2000; 42:816-824. palsy surveys and registers. Dev Med Child Neuro. 2000; 42:816-824. Yesnuar 2003 Yesnuar 2003.