Patient/Caregiver Panels

Here are our current U.S. patient and caregiver counts. We typically obtain 50% response for non-cancers, and up to 20% for cancers.

Disease/Condition Patients/Caregivers
Achalasia 15
Acromegaly 10
Addiction 75
Addison’s Disease 108
ADHD 668
Albinism 27
Allergies 511
Alopecia 30
Alpha 1 Antitrypsin Deficiency 45
Alzheimer’s 869
Amyloidosis 3
Amyotrophic Lateral Sclerosis (ALS) 80
Anemia 207
Angelman Syndrome 19
Ankylosing Spondylitis 257
Antiphospholipid Syndrome 30
Anxiety 1428
Aplastic Anemia 122
Arachnoiditis 13
Arthrogryposis Multiplex Congenita 46
Asthma 1286
Ataxia 103
Atrial Fibrillation 102
Atypical Hemolytic Uremic Syndrome (aHUS) 44
Autism 705
Avascular Necrosis 24
Barth Syndrome 10
Batten Disease 5
Behcet’s Disease 38
Biliary Atresia 14
Bipolar 734
Borderline Personality Disorder 85
Brain Aneurysm 12
Bronchiectasis 16
Bronchitis 37
Caroli Disease 8
Carpal Tunnel 59
CDKL5 19
Celiac Disease 170
Cerebral Palsy 358
Cervical Dystonia 9
Charge Syndrome 7
Chiari Malformation 223
Chronic Fatigue Syndrome 111
Chronic Pain, Back Pain 459
CIDP Chronic Inflammatory Demyelinating Polyneuropathy 86
Cirrhosis 45
Cleft 39
Cluster Headache 125
Complex Regional Pain Syndrome 83
Congenital Sucrase-Isomaltase Deficiency (CSID) 7
COPD 558
Craniosynostosis 15
Crohn’s Disease 748
Cushing’s Disease 117
Cyclic Vomiting Syndrome 36
Cystic Fibrosis 1709
Dandy Walker 10
Deep Vein Thrombosis 41
Degenerative Disc Disease 299
Deletion Duplication Syndrome 167
Depression 1730
Dercum’s Disease 8
Dermatomyositis 28
Developmental Delay 75
Diabetes 3194
Diverticulitis 40
Doose Syndrome 8
Down syndrome 94
Dravet Syndrome 33
Dupuytren’s Contracture 5
Dwarfism 25
Dysautonomia 334
Dyslexia 16
Dystonia 34
Eating Disorder 36
Eczema 134
Ehlers Danlos Syndrome 625
Endometriosis 142
Eosinophilic Esophagitis 200
Eosinophilic Gasteroenteritis 7
Epidermolysis Bullosa 10
Epilepsy 1959
Epstein Barr Syndrome 22
Fabry disease 110
Familial Adenomatous Polyposis 36
Fatty Liver Disease 31
Fatty Oxidation Disorder 44
Fetal Alcohol Syndrome 12
Fibrodysplasia Ossificans Progressiva 10
Fibromyalgia 1080
Fragile X Syndrome 6
Friedreich’s Ataxia 30
Gastritis 32
Gastroparesis 190
Gaucher 55
GERD 379
Glaucoma 63
Glutaric Acidemia Type 1 12
Gout 51
Grave’s Disease 68
Guillain-Barre Syndrome 39
Hashimoto’s Disease 205
Hearing Loss 222
Heart Disease 1264
Hemochromatosis 17
Hemophilia 1484
Hemophilia A 904
Hemophilia B 441
Hepatitis 229
Hepatolenticular Degeneration 11
Hereditary Angioedema 26
Hereditary hemorrhagic telangiectasia (HHT) 6
Hereditary Spastic Paraparesis 8
Hernia 52
Herpes 26
Hidradenitis Suppurativa 40
High Blood Pressure 1205
High Cholesterol 331
Hip Dysplasia 17
Hirschsprung’s Disease 18
HIV 501
Human Growth Hormone Deficiency 203
Huntingtons Disease 359
Hydrocephalus 202
Hyperhidrosis 9
Hyperkalemia 5
Hypoglycemia 28
Hypokalemia 4
Hypoparathyroidism 9
Hypothyroidism 611
Hypotonia 44
Hypoxic Ischemic Encephalopathy (HIE) 8
Immune Thrombocytopenic Purpura (ITP) 75
Inclusion Body Myositis 7
Incontinence 36
Incontinentia Pigmenti 33
Infantile Spasms 36
Insomnia 126
Interstitial Cystitis 55
Interstitial Lung Disease 39
Intracranial Hypertension 85
Iritis 6
Irritable Bowel Syndrome (IBS) 259
Juvenile Arthritis 102
Keratoconus 13
Kidney Disease 526
Klippel-Feil Syndrome 12
Landau Kleffner Syndrome 4
Langerhans Cell Histiocytosis 6
Lennox Gastaut Syndrome 365
LEOPARD Syndrome 4
Leukodsytrophy 15
Lichen Sclerosis 7
Lipedema 15
Lissencephaly 17
Liver Disease (not hepatitis) 197
Loin Pain Hematuria Syndrome 4
Lupus 805
Lyme Disease 80
Lymphedema 64
Macular Degeneration 37
Maple Syrup Urine Disease 5
Marfan Syndrome 34
Mastocytosis (Mast Cell Activating Disease) 119
McCune-Albright Syndrome 5
Meniere’s Disease 44
Mental Retardation 22
Microcephaly 21
Migraine 675
Mitochondrial Disease 94
Mixed Connective Tissue Disease 77
Moebius Syndrome 7
Monoclonal gammopathy of undetermined significance (MGUS) 6
Mood Disorder 23
MTHFR 34
Mucopolysaccharidoses (MPS) 52
Multiple Sclerosis 4401
Multiple System Atrophy 7
Muscular Dystrophy 272
Myasthenia Gravis 130
Myelodysplastic syndrome (MDS) 44
Myositis 28
Narcolepsy 151
NASH 23
Neuralgia 70
Neurofibromatosis 46
Neurogenic Bladder 37
Neuromyelitis optica (NMO) 18
Neuropathy 303
Neutropenia 43
Noonan Syndrome 6
Obesity 104
Obsessive Compulsive Disorder (OCD) 109
Oppositional Defiant Disorder (ODD) 46
Organ Transplant 159
Organic Acidemia 20
Osteoarthritis 816
Osteogenesis Imperfecta 108
Osteomyelitis 4
Osteonecrosis 6
Osteopenia 26
Osteoporosis 123
Pancreatitis 35
Paralysis 129
Parkinson’s Disease 613
Paroxysmal Nocturnal Hemoglobinuria (PNH) 77
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 15
Pemphigus 98
Pervasive Development Disorder 8
Phenylketonuria (PKU) 16
Pheochromocytoma 13
Pierre Robin Sequence 16
Pitt-Hopkins Syndrome 6
Plantar Fasciitis 21
Polychrondritis 16
Polycystic Ovarian Syndrome (PCOS) 225
Polycythemia Vera 55
Polymicrogyria 13
Polymyositis 12
Pompe Disease 32
Posttraumatic Stress Disorder (PTSD) 439
Primary Biliary Cholangitis (PBC) 24
Primary Ciliary Dyskinesia (PCD) 4
Primary Immunodeficiency (PID) 196
Primary Sclerosing Cholangitis 9
Progressive Supranuclear Palsy 4
Psoriasis Psoriatic Arthritis 304
Pulmonary Arterial Hypertension 674
Pulmonary Fibrosis 114
Raynaud’s Syndrome 196
Restless Leg Syndrome 95
Rett Syndrome 79
Rheumatoid Arthritis 568
Rosacea 16
Sarcoidosis 99
Scheuermann’s Kyphosis 5
Schinzel-Giedion Syndrome 4
Schizencephaly 22
Schizophrenia 172
Sciatica 45
Scleroderma 193
Scoliosis 201
Sensory Processing Disorder 81
Shaken Baby Syndrome 6
Short Bowel Syndrome 50
Sickle Cell Disease 571
Sjogren’s Syndrome 326
Sleep Apnea 406
Spina Bifida 135
Spinal Cord 364
Spinal Muscular Atrophy 405
Stickler Syndrome 18
Stroke 285
Sturge Weber Syndrome 14
Syncope 38
Syringomyelia 68
Tay Sachs 22
Temporomandibular joint (TMJ) 30
Thoracic Outlet Syndrome 19
Thrombocytopenia 7
Tourette’s Syndrome 45
Traumatic Brain Injury 122
Trisomy X 9
Tuberous Sclerosis 224
Ulcerative Colitis 244
Urea Cycle Disorder 38
Uveitis 19
Various 3642
Vasculitis 18
Vertebral Artery Dissection 6
Vertigo 49
Vision Impairment 324
Vitamin D Deficiency 16
Vitiligo 31
Von Willebrand Disease 360
Waldenstrom’s Macroglobulinemia 124
Wegener’s Granulomatosis with Polyangiitis (GPA) 11
Williams Syndrome 15
Wilson’s Disease 10
Wolff-Parkinson-White (WPW) syndrome 17
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.