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Patient Advocacy Organizations, Industry Funding, and Conflicts of Interest Supplementary Online Content Rose SL, Highland J, Karafa MT, Joffe S. Patient advocacy organizations, industry funding, and conflicts of interest. JAMA Intern Med. Published online January 17, 2017. doi:10.1001/jamainternmed.2016.8443 eTable 1. Search Terms Used to Identify Organizations eTable 2. Inclusion and Exclusion Criteria eTable 3. Sensitivity Analysis Comparing Survey Responses of Executive and Non-Executive Respondents of Patient Advocacy Organizations (PAOs) eFigure. Survey This supplementary material has been provided by the authors to give readers additional information about their work. © 2017 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 10/01/2021 eTable 1. Search Terms Used to Identify Organizations Aagenaes Syndrome Anoxia Carcinoid Aarskog Syndrome Antiphospholipid Syndrome Carcinoma Aase-Smith Syndrome II Antley-Bixler Syndrome Cardiac Abdominal Cystic Phenotype Cardiogenic Lymphangioma Anxiety Cardiogenic Shock Abdominal Obesity Metabolic Aphasia Cardiomyopathy Syndrome Apraxia Cardiovascular Achondroplasia Arrhythmia Carotid Artery Disease Achromatopsia Arteriosclerosis Celiac Acid Lipase Disease Arthritis Central Cord Syndrome Acoustic Neuroma Asperger Syndrome Cervical Cancer Acquired Hyperostosis Aspergers Chondrodysplasia Punctata Syndrome Asthma Acrocephalosyndactylia Chordoma Astrocytoma Addison Disease Churg-Strauss Syndrome Ataxia ADHD Colon Cancer Atherosclerosis Adie's syndrome Colorectal Cancer Atrial Adrenal Hyperplasia Conduct Disorder Atrial Fibulation Adrenoleukodystrophy Congenital Heart Atrial Septal Defect Agnosia Congenital Heart Defects Attention Deficit Disorder Agoraphobia Congenital Hypothyroidism Autism Aicardi Syndrome COPD Autistic AIDS Coronary Autoimmune Albinism Coronary Heart Disease Autoimmune Allergy Corprophagia Lymphoproliferative Syndrome Craniopharyngioma Alopecia Areata Autonomic Dysreflexia Creutzfeld-Jakob Disease ALPS Batten Disease Delirium ALS Bile Duct Dementia Alstrom Syndrome Binge Eating Depression Alzheimer Bipolar Disorder Dermatitis Alzheimer’s Bone Disease Diabetes American and Heart and Bone Marrow Disease and Advocacy Association Bosom Amputation Disease and Association Brain Amputee Disease and Coalition Brain Cancer Amyotrophic Lateral Sclerosis Disease and Family Breast Cancer Anal Cancer Disease and Foundation Bulimia Anemia Disease and Organization Burkitt's Lymphoma Anencephaly Disease and Society Camurati-Engelmann Syndrome Aneurysm Disease Association Canavan Angina Disease Coalition Cancer Angiomatosis Disease Foundation Cancer Anorchia Disease Network Capgras Syndrome Anorexia Disease Organization © 2017 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 10/01/2021 Disease Society Heart and Group Lou Gehrig Dravet Heart and Network Lung Cancer Dwarfism Heart and Organization Lupus Dyscalculia Heart and Rhythm Lymphoma Dyslexia Heart and Society Marfan Dysomnias Heart Attack Marfan Syndrome Dysostoses Heart Block McBride Dysplasia Heart Disease Melanoma Eating Disorders Heart Failure Meningitis Encephalomyletis Heart Murmur Mental Disorder Encephalopathy Heart Palpitations Mental Health Enchondromatosis Heart Transplant Mesothelioma Encopresis Heart Valve Disease Metabolic Syndrome Endocarditis Hemangioendothelioma Microphthalmic Ependymoma Hemiplegia Mitral Epilepsy Hemochromatosis Mitral Valve Prolapse Epilepsy and Association Hemolytic anemia Mulibrey Nanism Epilepsy and Organization Hemophilia Multiple Chemical Sensitivity Esophageal Cancer Heritable Multiple Personality Disorder Familial Histiocytosis Muscular Dystrophy Familial Dysautonomia HIV Musculoskeletal Felty's Syndrome Hodgkin Multiple Sclerosis Fibromuscular Huntingtons Disease Myasthenia Gravis Fibrous Dysplasia Hydrocephalus Myelodysplastic Focal Dermal Hypoplasia Hyperostosis Myeloma Funnel Chest Hypertension Myeloma Gambling Hypophosatasia Myeloproliferative Gastric Cancer Hypotension Myositis Gaucher Hypotonia Neoplasm Genetic Inflammatory Nerve Gigantism Inherit Neuritis Glioma Kaposi Sarcoma Neuroblastoma Glomerulonephritis Kawasaki Disease Neurological Graves Disease Kidney Cancer Non-Hodgkins Guillian-Barre Syndrome Kippel-Feil Syndrome Obsessive Compulsive Disorder Head and Neck Kyphosis Opioid Head Injury Lambert-Eaton Myasthenic Oral Cancer Health Advocacy Syndrome Orofaciodigital Syndromes Health and Consumer Laron Syndrome Orthopedic Health and Society Laryngeal Osteoarthritis Health Organization Learning Disabilities Osteochondroma Heart Leukemia Osteochondroma Heart and Advocacy Leukoencephalitis Osteogenesis Heart and Association Limb Osteoid Osteoma Heart and Consumer Little People Osteomalacia Heart and Foundation Long QT Syndrome Osteomyelitis © 2017 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 10/01/2021 Osteoporosis Skin Cancer Osteosarcoma Sleep Disorder Osteosclerosis Social Phobia Ovarian Cancer Spina Bifida Paget's Disease Spinal Cancer Pain Spinal Cord Injuries Palsy Spinal Muscular Atrophy Pancreatic Cancer Spinal Stenosis Panic Disorder Spinal Tumor Parasomnia Spine Parkinson’s Disease Spondylitis Patient Advocacy Squamous Patient and Coalition Stomach Cancer Patient and Group Stroke Patient and Organization Support Group Patient Coalition Syndactyly Patient Group Synostosis Patient Organization Tay Sachs Penile Cancer Testicular Penis Tetralogy of Fallot Pericarditis Thanatophoric Dysplasia Peripheral Arterial (Artery) Thymoma Disease Thyroiditis Phobia TMJ Pica Tongue Cancer Platybasia Tourette Syndrome Polio Tumor Post Traumatic Stress Disorder Type 1 Diabetes Prostate Uterine Cancer Prostate Cancer Vaginal Cancer Proteus Syndrome Varicose Veins PTSD Vascular Pycnodysostosis Vasculitis Reactive Attachment Disorder Ventricular Septal Defect Rectal Von Hipple Landau Syndrome Renal Cancer Vulvar Retinoblastoma Waldenström Reynaud's Disease Macroglobulinemia Rhabdomyosarcoma Weill-Marchesani Syndrome Rheumatoid Arthritis Wilms Tumor Rubinstein-Taybi Syndrome Sarcoma Schizophrenia Scoliosis Sézary syndrome Sisters and Network © 2017 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 10/01/2021 eTable 2. Inclusion and Exclusion Criteria Inclusion Criteria Exclusion Criteria • Operates outside of the government • Primarily serves populations outside of the United States • Concerns itself with those affected by medical conditions and/or the medical system (patients, • Serves local population only consumers, family members or caregivers) • Fundraising only, no other activities • Works specifically and primarily toward a mission of helping affected individuals. • Primarily focuses on research activities • Affected individuals are involved in the • Is a social services organization development and administration of the organization. • Is a medical services organization • The collective identity of the group is based upon a • Sole activity is running a camp disease or illness experience • Financial institutions or insurance companies • Governmental organizations • Professional organizations • No website © 2017 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 10/01/2021 eTable 3. Sensitivity Analysis Comparing Survey Responses of Executive and Non-Executive Respondents of Patient Advocacy Organizations (PAOs) Non-Executive Executive Responders Responders (N=43) (N=246) Respondent and PAO Demographics n N (%) n N (%) P Value Respondents Gender: Female 40 35 (88) 239 170 .030a (71) Respondents Race: White 41 36 (88) 236 221 .19b (94) Respondent had worked more than> 5 years for 41 25 (61) 240 178 .081a PAO (74) Respondent or family member has the disease that 42 12 (29) 238 139 <.001b is the focus of the PAO (yes/no) (58) Number of years respondent was involved with 40 7 [5, 13] 231 13 [8, .002c patient advocacy 20] PAO is a tax exempt, not-for-profit entity (yes/no) 43 42 (98) 237 235 .39b (99) PAO has a singular disease focus (yes/no) 43 29 (67) 245 174 .64a (71) PAO has any paid employees (yes/no) 43 35 (81) 245 170 .11a (69) . Number of paid employees (median [IQR]) 34 4 [2, 9] 161 3 [1, 8] .28c PAO has a Board of Trustees/Directors (yes/no) 43 40 (93) 244 236 .22b (97) Number of PAO members (median [IQR]) 35 12 [8, 2000] 217 23 [9, .79c 1000] Diseases or Conditions that PAO addresses:† . Genetic or Rare Disorders 43 12 (28) 245 77 (31) .64a . Cancer 43 18 (42) 245 58 (24) .013a . Neurological Disorders 43 4 (9) 245 48 (20) .11a . Mental Disorders 43 2 (5) 245 21 (9) .55b . HIV/AIDS 43 3 (7) 245 17 (7) .99b . Orthopedic or Musculoskeletal Disorders 43 3 (7) 245 15 (6) .74b . Cardiovascular Disorders 43 4 (9) 245 11 (5) .25b . Digestive Diseases 43 4 (9) 245 11 (5) .25b . Endocrine Disorders/Diabetes 43 0 (0) 245 13 (5) .23b . All diseases/broad based health advocacy (not 43 0 (0) 245 13 (5) .23b disease-specific) . Respiratory/Pulmonary Diseases 43 3 (7) 245 10 (4) .42b . Neuro-Muscular Disorders 43 0 (0) 245 12 (4) .22b . Reproductive Issues 43 2 (5) 245 9 (4) .67b . Infectious Diseases (Excluding HIV/AIDS) 43 0 (0) 245 8 (3) .61b . Addictions 43 0 (0) 245 5 (2) .99b † This is a non-mutually exclusive category. PAOs could select multiple disease areas of interest. a=Pearson's chi-square test, b=Fisher's Exact test, c=Kruskal-Wallis test © 2017 American Medical Association. All rights reserved. Downloaded From: https://jamanetwork.com/ on 10/01/2021 eTable 3 (Continued). Sensitivity Analysis Comparing Survey Responses
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