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 14
Acromegaly 10
Addiction 67
Addison’s Disease 106
ADHD 633
Albinism 26
Allergies 490
Alopecia 27
Alpha 1 Antitrypsin Deficiency 44
Alzheimer’s 787
Amyloidosis 3
Amyotrophic Lateral Sclerosis (ALS) 71
Anemia 199
Angelman Syndrome 19
Ankylosing Spondylitis 257
Antiphospholipid Syndrome 30
Anxiety 1352
Aplastic Anemia 116
Arachnoiditis 13
Arthrogryposis Multiplex Congenita 45
Asthma 1209
Ataxia 73
Atrial Fibrillation 99
Atypical Hemolytic Uremic Syndrome (aHUS) 44
Autism 617
Avascular Necrosis 24
Barth Syndrome 10
Batten Disease 5
Becker Muscular Dystrophy 19
Behcet’s Disease 38
Biliary Atresia 14
Bipolar 697
Borderline Personality Disorder 78
Brain Aneurysm 12
Bronchiectasis 15
Bronchitis 36
Caroli Disease 8
Carpal Tunnel 59
CDKL5 19
Celiac Disease 146
Cerebral Palsy 345
Cervical Dystonia 9
Charcot Marie Tooth Disease 29
Charge Syndrome 7
Chiari Malformation 220
Chronic Fatigue Syndrome 104
Chronic Pain, Back Pain 449
CIDP Chronic Inflammatory Demyelinating Polyneuropathy 86
Cirrhosis 45
Cleft 39
Cluster Headache 124
Complex Regional Pain Syndrome 82
Congenital Sucrase-Isomaltase Deficiency (CSID) 7
COPD 524
Craniosynostosis 15
Crohn’s Disease 739
Cushing’s Disease 117
Cyclic Vomiting Syndrome 36
Cystic Fibrosis 1701
Dandy Walker 10
Deep Vein Thrombosis 41
Degenerative Disc Disease 287
Deletion Duplication Syndrome 165
Denerative Disc Disease 1
Depression 1650
Dercum’s Disease 8
Dermatomyositis 28
Developmental Delay 72
Diabetes 2901
Diverticulitis 37
Doose Syndrome 7
Down Syndrome 90
Dravet Syndrome 33
Duchenne Muscular Dystrophy (DMD) 106
Dupuytren’s Contracture 5
Dwarfism 25
Dysautonomia 314
Dyslexia 14
Dystonia 34
Eating Disorder 35
Eczema 127
Ehlers Danlos Syndrome 610
endometriosis 134
Eosinophilic Esophagitis 197
Eosinophilic Gasteroenteritis 7
Epidermolysis Bullosa 10
Epilepsy 1920
Epstein Barr Syndrome 20
Fabry disease 110
Facioscapulohumeral Muscular Dystrophy (FSH) 6
Factor V Leiden 52
Familial Adenomatous Polyposis 35
Fatty Liver Disease 30
Fatty Oxidation Disorder 43
Fetal Alcohol Syndrome 12
Fibrodysplasia Ossificans Progressiva 10
Fibromyalgia 1049
Fragile X Syndrome 5
Friedreich’s Ataxia 28
Gastritis 31
Gastroparesis 184
Gaucher 55
GERD 351
Glutaric Acidemia Type 1 12
Gout 44
Grave’s Disease 64
Guillain-Barre Syndrome 39
Hashimoto’s Disease 195
Hearing Loss 218
Heart Disease 1191
Hemochromatosis 17
Hemophilia 1477
Hemophilia A 900
Hemophilia B 440
Hepatitis 223
Hepatolenticular Degeneration 11
Hereditary Angioedema 26
Hereditary hemorrhagic telangiectasia (HHT) 6
Hereditary Spastic Paraparesis 8
Hernia 48
Herpes 24
Hidradenitis Suppurativa 36
High Blood Pressure 1083
High Cholesterol 294
Hip Dysplasia 17
Hirschsprung’s Disease 18
HIV 480
Human Growth Hormone Deficiency 200
Huntingtons Disease 358
Hydrocephalus 200
Hyperhidrosis 8
Hyperkalemia 5
Hypoglycemia 27
Hypokalemia 4
Hypoparathyroidism 9
Hypothyroidism 583
Hypotonia 44
Hypoxic Ischemic Encephalopathy (HIE) 8
Idiopathic Pulmonary Fibrosis 5
Immune Thrombocytopenic Purpura (ITP) 72
Inclusion Body Myositis 7
Incontinence 35
Incontinentia Pigmenti 33
Infantile Spasms 36
Insomnia 122
Interstitial Cystitis 54
Interstitial Lung Disease 37
Intracranial Hypertension 83
Iritis 6
Irritable Bowel Syndrome (IBS) 243
Juvenile Arthritis 99
Keratoconus 12
Kidney Disease 507
Klippel-Feil Syndrome 12
Landau Kleffner Syndrome 4
Langerhans Cell Histiocytosis 6
Lennox Gastaut Syndrome 362
LEOPARD Syndrome 4
Leukodsytrophy 15
Lichen Sclerosis 7
Limb Girdle Muscular Dystrophy 17
Lipedema 15
Lissencephaly 17
Liver Disease (not hepatitis) 195
Loin Pain Hematuria Syndrome 4
Lupus 792
Lyme Disease 76
Lymphedema 62
Macular Degeneration 32
Maple Syrup Urine Disease 5
Marfan Syndrome 34
Mastocytosis (Mast Cell Activating Disease) 112
McCune-Albright Syndrome 5
Meniere’s Disease 41
Mental Retardation 21
Microcephaly 21
Migraine 655
Mitochondrial Disease 93
Mixed Connective Tissue Disease 76
Moebius Syndrome 7
Monoclonal gammopathy of undetermined significance (MGUS) 6
Mood Disorder 21
MTHFR 33
Mucopolysaccharidoses (MPS) 52
Multiple Sclerosis 4567
Multiple System Atrophy 7
Muscular Dystrophy 269
Myasthenia Gravis 126
Myelodysplastic syndrome (MDS) 36
Myositis 26
Myotonic Muscular Dystrophy (MMD) 20
Narcolepsy 133
NASH 23
Neuralgia 68
Neurofibromatosis 45
Neurogenic Bladder 37
Neuromyelitis optica (NMO) 18
Neuropathy 284
Neutropenia 43
Noonan Syndrome 5
Obesity 98
Obsessive Compulsive Disorder (OCD) 102
Oppositional Defiant Disorder (ODD) 41
Organ Transplant 155
Organic Acidemia 20
Osteoarthritis 778
Osteogenesis Imperfecta 108
Osteomyelitis 4
Osteonecrosis 6
Osteopenia 26
Osteoporosis 111
Pancreatitis 31
Paralysis 124
Parkinson’s Disease 570
Paroxysmal Nocturnal Hemoglobinuria (PNH) 74
Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) 14
Pemphigus 98
Pervasive Development Disorder 7
Phenylketonuria (PKU) 14
Pheochromocytoma 13
Pierre Robin Sequence 16
Pitt-Hopkins Syndrome 6
Plantar Fasciitis 21
Polychrondritis 15
Polycystic Ovarian Syndrome (PCOS) 215
Polycythemia Vera 55
Polymicrogyria 12
Polymyositis 11
Pompe Disease 15
Posttraumatic Stress Disorder (PTSD) 412
Primary Biliary Cholangitis (PBC) 33
Primary Ciliary Dyskinesia (PCD) 4
Primary Immunodeficiency (PID) 194
Progressive Supranuclear Palsy 3
Psoriasis Psoriatic Arthritis 297
Pulmonary Arterial Hypertension 666
Pulmonary Fibrosis 108
Raynaud’s Syndrome 194
Restless Leg Syndrome 93
Rett Syndrome 79
Rheumatoid Arthritis 545
Rosacea 16
Sarcoidosis 98
Scheuermann’s Kyphosis 5
Schinzel-Giedion Syndrome 4
Schizencephaly 22
Schizophrenia 159
Sciatica 44
Scleroderma 191
Scoliosis 196
Sensory Processing Disorder 70
Shaken Baby Syndrome 6
Short Bowel Syndrome 49
Sickle Cell Disease 554
Sjogren’s Syndrome 321
Sleep Apnea 383
Spina Bifida 135
Spinal Cord 357
Spinal Muscular Atrophy 403
Stickler Syndrome 18
Stroke 259
Sturge Weber Syndrome 14
Syncope 38
Syringomyelia 68
Tay Sachs 22
Temporomandibular joint (TMJ) 28
Thoracic Outlet Syndrome 19
Thrombocytopenia 7
Tourette’s Syndrome 44
Traumatic Brain Injury 114
Trisomy X 9
Tuberous Sclerosis 221
Ulcerative Colitis 248
Urea Cycle Disorder 38
Uveitis 19
Various 3489
Vasculitis 18
Vertebral Artery Dissection 6
Vertigo 45
Vision Impairment 306
Vitamin D Deficiency 15
Vitiligo 30
Von Willebrand Disease 356
Waldenstrom’s Macroglobulinemia 124
Wegener’s Granulomatosis with Polyangiitis (GPA) 11
Williams Syndrome 15
Wilson’s Disease 10
Wolff-Parkinson-White (WPW) syndrome 15
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.