Patient/Caregiver Panels

Here are our current U.S. patient and caregiver counts:

Disease/Condition Patients/Caregivers
Achalasia 12
Acromegaly 10
Addiction 53
Addison’s Disease 94
ADHD 544
Albinism 26
Allergies 447
Alopecia 24
Alpha 1 Antitrypsin Deficiency 35
Alzheimer’s 693
Amyloidosis 3
Amyotrophic Lateral Sclerosis (ALS) 57
Anemia 169
Angelman Syndrome 18
Ankylosing Spondylitis 249
Antiphospholipid Syndrome 28
Anxiety 1103
Aplastic Anemia 110
Arachnoiditis 13
Arthrogryposis Multiplex Congenita 44
Asthma 1046
Ataxia 71
Atrial Fibrillation 89
Atypical Hemolytic Uremic Syndrome (aHUS) 42
Autism 547
Avascular Necrosis 24
Barth Syndrome 10
Batten Disease 5
Becker Muscular Dystrophy 11
Behcet’s disease 37
Biliary Atresia 14
Bipolar 573
Borderline Personality Disorder 55
Brain Aneurysm 12
Bronchiectasis 14
Bronchitis 33
Caroli Disease 8
Carpal Tunnel 51
CDKL5 19
Celiac Disease 129
Cerebral Palsy 322
Cervical Dystonia 8
Charcot Marie Tooth Disease 26
Charge Syndrome 7
Chiari Malformation 209
Chronic Fatigue Syndrome 92
Chronic Pain, Back Pain 394
CIDP Chronic Inflammatory Demyelinating Polyneuropathy 84
Cirrhosis 43
Cleft 39
Cluster Headache 122
Complex Regional Pain Syndrome 76
Congenital Sucrase-Isomaltase Deficiency (CSID) 7
COPD 458
Craniosynostosis 15
Crohn’s Disease 636
Cushing’s Disease 103
Cyclic Vomiting Syndrome 34
Cystic Fibrosis 1670
Dandy Walker 10
Deep Vein Thrombosis 36
Degenerative Disc Disease 263
Deletion Duplication Syndrome 157
Depression 1366
Dercum’s Disease 8
Dermatomyositis 28
Developmental Delay 66
Diabetes 2433
Diverticulitis 34
Doose Syndrome 6
Down Syndrome 85
Dravet Syndrome 26
Duchenne Muscular Dystrophy (DMD) 80
Dupuytren’s Contracture 4
Dwarfism 23
Dyslexia 13
Dystonia 31
Eating Disorder 31
Eczema 117
Ehlers Danlos Syndrome 582
Endometriosis 121
Eosinophilic Esophagitis 191
Eosinophilic Gasteroenteritis 7
Epidermolysis Bullosa 10
Epilepsy 1705
Epstein Barr Syndrome 20
Fabry disease 108
Facioscapulohumeral Muscular Dystrophy (FSH) 6
Familial Adenomatous Polyposis 34
Fatty Liver Disease 26
Fatty Oxidation Disorder 43
Fetal Alcohol Syndrome 11
Fibrodysplasia Ossificans Progressiva 10
Fibromyalgia 940
Fragile X Syndrome 5
Friedreich’s Ataxia 27
Gastritis 24
Gastroparesis 168
Gaucher 52
GERD 314
Glutaric Acidemia Type 1 12
Gout 40
Grave’s Disease 52
Guillain-Barre Syndrome 39
Hashimoto’s Disease 172
Hearing Loss 205
Heart Disease 1069
Hemochromatosis 17
Hemophilia 1387
Hemophilia A 877
Hemophilia B 385
Hepatitis 208
Hepatolenticular Degeneration 11
Hereditary Angioedema 26
Hereditary hemorrhagic telangiectasia (HHT) 6
Hereditary Spastic Paraparesis 8
Hernia 44
Herpes 20
Hidradenitis Suppurativa 35
High Blood Pressure 910
High Cholesterol 232
Hip Dysplasia 16
Hirschsprung’s Disease 17
HIV 435
Human Growth Hormone Deficiency 194
Huntingtons Disease 357
Hydrocephalus 198
Hyperhidrosis 7
Hyperkalemia 5
Hypoglycemia 26
Hypokalemia 4
Hypoparathyroidism 9
Hypothyroidism 521
Hypotonia 44
Hypoxic Ischemic Encephalopathy (HIE) 8
Idiopathic Pulmonary Fibrosis 12
Immune Thrombocytopenic Purpura (ITP) 66
Inclusion Body Myositis 7
Incontinence 30
Incontinentia Pigmenti 32
Insomnia 103
Interstitial Cystitis 48
Interstitial Lung Disease 33
intracranial hypertension 79
Iritis 6
Irritable Bowel Syndrome (IBS) 212
Juvenile Arthritis 96
Keratoconus 11
Kidney Disease 407
Klippel-Feil Syndrome 12
Landau Kleffner Syndrome 4
Langerhans Cell Histiocytosis 6
Lennox Gastaut Syndrome 343
LEOPARD Syndrome 4
Leukodsytrophy 15
Lichen Sclerosis 6
Limb Girdle Muscular Dystrophy 15
Lipedema 14
Lissencephaly 16
Liver Disease (not hepatitis) 181
Loin Pain Hematuria Syndrome 4
Lupus 733
Lyme Disease 66
Lymphedema 58
Macular Degeneration 28
Maple Syrup Urine Disease 5
Marfan Syndrome 32
Mastocytosis (Mast Cell Activating Disease) 104
McCune-Albright Syndrome 5
Meniere’s Disease 37
Mental Retardation 21
Microcephaly 20
Migraine 591
Mitochondrial Disease 88
Mixed Connective Tissue Disease 71
Moebius Syndrome 5
Monoclonal gammopathy of undetermined significance (MGUS) 5
Mood Disorder 16
MTHFR 29
Mucopolysaccharidoses (MPS) 52
Multiple Sclerosis 4511
Multiple System Atrophy 7
Muscular Dystrophy 220
Myasthenia Gravis 86
Myelodysplastic syndrome (MDS) 31
Myositis 25
Myotonic Muscular Dystrophy (MMD) 20
Narcolepsy 93
NASH 22
Neuralgia 67
Neurofibromatosis 40
Neurogenic Bladder 35
Neuromyelitis optica (NMO) 18
Neuropathy 246
Neutropenia 42
Noonan Syndrome 5
Obesity 85
Obsessive Compulsive Disorder (OCD) 86
Oppositional Defiant Disorder (ODD) 31
Organ Transplant 140
Organic Acidemia 20
Osteoarthritis 690
Osteogenesis Imperfecta 106
Osteomyelitis 4
Osteonecrosis 5
Osteopenia 25
Osteoporosis 101
Pancreatitis 28
Paralysis 104
Parkinson’s Disease 548
Paroxysmal Nocturnal Hemoglobinuria (PNH) 69
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 14
Pemphigus 97
Pervasive Development Disorder 6
Phenylketonuria (PKU) 11
Pheochromocytoma 13
Pierre Robin Sequence 16
Pitt-Hopkins Syndrome 6
Plantar Fasciitis 20
Polychrondritis 14
Polycystic Ovarian Syndrome (PCOS) 190
Polycythemia Vera 54
Polymicrogyria 11
Polymyositis 9
Posttraumatic Stress Disorder (PTSD) 344
Postural Orthostatic Tachycardia Syndrome (POTS) Dysautonomia 278
Primary Biliary Cholangitis (PBC) 22
Primary Ciliary Dyskinesia (PCD) 4
Primary Immunodeficiency (PID) 179
Primary Sclerosing Cholangitis 8
Progressive Supranuclear Palsy 3
Psoriasis Psoriatic Arthritis 281
Pulmonary Arterial Hypertension 640
Pulmonary Fibrosis 96
Raynaud’s Syndrome 178
Restless Leg Syndrome 83
Rett Syndrome 78
Rheumatoid Arthritis 495
Rosacea 15
Sarcoidosis 93
Scheuermann’s Kyphosis 4
Schinzel-Giedion Syndrome 4
Schizencephaly 22
Schizophrenia 140
Sciatica 38
Scleroderma 182
Scoliosis 179
Sensory Processing Disorder 62
Shaken Baby Syndrome 6
Short Bowel Syndrome 17
Sickle Cell Disease 535
Sjogren’s Syndrome 307
Sleep Apnea 335
Spina Bifida 130
Spinal Cord 333
Spinal Muscular Atrophy 367
Stickler Syndrome 18
Stroke 218
Sturge Weber Syndrome 14
Syncope 31
Syringomyelia 67
Tay Sachs 22
Temporomandibular joint (TMJ) 25
Thoracic Outlet Syndrome 19
Thrombocytopenia 5
Tourette’s Syndrome 37
Traumatic Brain Injury 106
Trisomy X 9
Tuberous Sclerosis 202
Ulcerative Colitis 190
Urea Cycle Disorder 38
Uveitis 16
Vasculitis 13
Vertebral Artery Dissection 6
Vertigo 41
Vision Impairment 262
Vitamin D Deficiency 15
Vitiligo 28
Von Willebrand Disease 348
Waldenstrom’s Macroglobulinemia 124
Wegener’s Granulomatosis with Polyangiitis (GPA) 11
Williams Syndrome 14
Wilson’s Disease 10
Wolff-Parkinson-White (WPW) syndrome 13
X-Linked Hypophosphatemia 7
Condition – Cancers Patients/Caregivers
Anal Cancer 239
Bladder Cancer 297
Bone Cancer 186
Brain/Spinal Cord 612
Breast Cancer 8031
Cervical Cancer 521
Colorectal Cancer 1438
Endometrial Cancer 807
Esophageal Cancer 320
Head/Neck/Throat 876
Hodgkin Disease 439
Kidney Cancer 388
Leukemia 864
Liver Cancer 231
Lung Cancer 1847
Multiple Myeloma 360
Non-Hodgkin Lymphoma 1095
Ovarian Cancer 1087
Pancreatic Cancer 530
Prostate Cancer 689
Sarcoma – soft tissue 269
Skin Cancer – Melanoma 417
Skin Cancer – non-Melanoma 136
Stomach Cancer 196
Testicular Cancer 158
Thyroid Cancer 432

For each type of cancer, patients are identified by stage of cancer, stage of treatment, age, and geographical location.

Clients continue to tell us how impressed they are with the high quality of our respondents. This is a result of:

  • Source – we recruit patients personally at advocacy events and other patient events; cancer patients come in through the American Cancer Society website; we ask physicians and pharmacists to refer patients with the desired specs to us; and our reliable panelists refer others they know with like conditions
  • Vetting – We vet each patient and caregiver who signs up both manually (looking at the answers to questions about the condition and treatment) and technologically (does their contact information match independent sources? are IP addresses unique?). If unsure, we contact the patient directly and discuss. Amazing how fraudulent entries will simply go away.
  • Review of data – We gain agreements from our clients to review survey data to make sure it aligns with other information about the respondents; and we apply our knowledge of the condition and its treatments to flag possible fraudulent respondents.

These practices set our respondents apart from those screened across the general population (“please check all the conditions you have”). It takes more time and attention, but we feel the highest quality data is certainly worth it.

With more than 30 years in market research experience on both the client and supplier side, we are happy to give you advice on the design of your research. And since we know our panelist very well, we can advise you on the best way to work with them to get the insights you and your clients require.