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 |
17 |
| Acromegaly |
11 |
| Addiction |
96 |
| Addison’s Disease (Adrenal insufficiency) |
113 |
| Albinism |
29 |
| Allergies |
609 |
| Alopecia |
29 |
| Alpha 1 Antitrypsin Deficiency (A1AD) |
47 |
| Alzheimer’s Disease (AD) |
958 |
| Amyloidosis |
4 |
| Amyotrophic Lateral Sclerosis (ALS) |
104 |
| Anemia |
240 |
| Angelman Syndrome (AS) |
20 |
| Ankylosing Spondylitis (AS) |
261 |
| Antiphospholipid Syndrome (APS) |
30 |
| Anxiety |
1745 |
| Aplastic Anemia (AA) |
149 |
| Arachnoiditis |
13 |
| Arthrogryposis Multiplex Congenita (AMC) |
44 |
| Asthma |
1510 |
| Ataxia |
105 |
| Atrial Fibrillation (AFIB) |
130 |
| Attention Deficit Hyperactivity Disorder (ADHD, ADD) |
861 |
| Atypical Hemolytic Uremic Syndrome (aHUS) |
40 |
| Autism |
981 |
| Avascular Necrosis (AVN, Osteonecrosis) |
31 |
| Barth Syndrome (BTHS) |
10 |
| Batten Disease |
5 |
| Behcet’s Disease (BD) |
40 |
| Biliary Atresia (BA) |
14 |
| Bipolar |
842 |
| Borderline Personality Disorder (BPD) |
105 |
| Brain Aneurysm |
15 |
| Bronchiectasis |
18 |
| Bronchitis |
43 |
| Caroli Disease |
8 |
| Carpal Tunnel Syndrome (CTS) |
70 |
| CDKL5 |
19 |
| Celiac Disease (CCD) |
300 |
| Cerebral Palsy (CP) |
406 |
| Cervical Dystonia |
9 |
| Charge Syndrome |
8 |
| Chiari Malformation (CM) |
235 |
| Chronic Fatigue Syndrome (CFS, ME) |
110 |
| Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) |
86 |
| Chronic obstructive pulmonary disease (COPD) |
632 |
| Chronic Pain, Back Pain |
569 |
| Cirrhosis (LC) |
45 |
| Cleft |
40 |
| Cluster Headache |
136 |
| Complex Regional Pain Syndrome (CRPS, RSD) |
91 |
| Congenital Sucrase-Isomaltase Deficiency (CSID) |
7 |
| Craniosynostosis |
15 |
| Crohn’s Disease (CD) |
809 |
| Cushing’s Disease (CS) |
118 |
| Cyclic Vomiting Syndrome (CVS) |
38 |
| Cystic Fibrosis (CF) |
1704 |
| Dandy Walker Syndrome (DWS) |
13 |
| Deep Vein Thrombosis (DVT) |
50 |
| Degenerative Disc Disease (DDD) |
323 |
| Deletion Duplication Syndrome |
177 |
| Depression (MDD) |
2074 |
| Dercum’s Disease (adiposis dolorosa) |
10 |
| Dermatomyositis (DM) |
28 |
| Developmental Delay (DD) |
98 |
| Diabetes (DM) |
3720 |
| Diverticulitis |
49 |
| Doose Syndrome (MAE) |
7 |
| Down Syndrome (DS) |
118 |
| Dravet Syndrome (DS) |
35 |
| Dupuytren’s Contracture |
6 |
| Dwarfism |
40 |
| Dysautonomia |
343 |
| Dyslexia |
16 |
| Dystonia |
39 |
| Eating Disorder |
42 |
| Eczema |
150 |
| Ehlers-Danlos Syndrome (EDS) |
636 |
| Endometriosis |
158 |
| Eosinophilic Esophagitis (EOE) |
229 |
| Eosinophilic Gasteroenteritis (EG) |
13 |
| Epidermolysis Bullosa (EB) |
11 |
| Epilepsy |
2027 |
| Epstein Barr Syndrome (EBV) |
24 |
| Fabry disease |
111 |
| Familial Adenomatous Polyposis (FAP) |
36 |
| Fatty Liver Disease (NAFLD) |
33 |
| Fatty Oxidation Disorder (FAOD) |
79 |
| Fetal Alcohol Syndrome (FAS) |
16 |
| Fibrodysplasia Ossificans Progressiva (FOP) |
11 |
| Fibromyalgia (FM) |
1190 |
| Fragile X Syndrome (FXS) |
101 |
| Friedreich’s Ataxia (FA) |
31 |
| Gastritis |
39 |
| Gastroesophageal Reflux Disease (GERD) |
434 |
| Gastroparesis (GP) |
215 |
| Gaucher Disease (GD) |
55 |
| Gout |
64 |
| Grave’s Disease (GD) |
85 |
| Guillain-Barre Syndrome (GBS) |
43 |
| Hashimoto’s Disease (HT) |
239 |
| Hearing Loss |
243 |
| Heart Disease |
1434 |
| Hemochromatosis (Iron Overload) |
18 |
| Hemophilia |
1519 |
| Hemophilia A |
930 |
| Hemophilia B |
439 |
| Hepatitis |
248 |
| Hereditary Angioedema (HAE) |
28 |
| Hereditary Hemorrhagic Telangiectasia (HHT) |
7 |
| Hereditary Spastic Paraparesis (HSP) |
9 |
| Hernia |
60 |
| Herpes (HSV) |
27 |
| Hidradenitis Suppurativa (HS) |
96 |
| High Blood Pressure (Hypertension, HBP) |
1482 |
| High Cholesterol (Hyperlipidemia) |
414 |
| Hip Dysplasia |
15 |
| Hirschsprung’s Disease (HD, HSCR) |
19 |
| HIV |
516 |
| Human Growth Hormone Deficiency (GHD) |
239 |
| Huntington’s Disease (HD) |
388 |
| Hydrocephalus |
217 |
| Hyperhidrosis |
11 |
| Hyperkalemia |
5 |
| Hyperparathyroidism |
9 |
| Hypoglycemia (Low Blood Sugar) |
35 |
| Hypokalemia |
4 |
| Hypoparathyroidism |
10 |
| Hypothyroidism |
716 |
| Hypotonia |
43 |
| Hypoxic Ischemic Encephalopathy (HIE) |
8 |
| Immune Thrombocytopenic Purpura (ITP) |
76 |
| Inclusion Body Myositis (IBM) |
7 |
| Incontinence |
49 |
| Incontinentia Pigmenti (IP) |
31 |
| Infantile Spasms (IS) |
42 |
| Insomnia |
139 |
| Interstitial Cystitis (IC) |
59 |
| Interstitial Lung Disease (ILD) |
45 |
| Intracranial Hypertension (IH, Pseudotumor Cerebri) |
84 |
| Iritis |
7 |
| Irritable Bowel Syndrome (IBS) |
297 |
| Juvenile Arthritis (JA) |
112 |
| Kidney Disease |
567 |
| Klippel-Feil Syndrome (KFS) |
12 |
| Landau Kleffner Syndrome (LKS) |
4 |
| Langerhans Cell Histiocytosis (LCH) |
6 |
| Lennox Gastaut Syndrome (LGS) |
358 |
| LEOPARD Syndrome |
4 |
| Leukodsytrophy |
16 |
| Lichen Sclerosis (LS) |
7 |
| Lipedema |
15 |
| Lissencephaly |
16 |
| Liver Disease (not hepatitis) |
227 |
| Loin Pain Hematuria Syndrome (LPHS) |
4 |
| Lupus |
871 |
| Lyme Disease |
85 |
| Lymphedema |
66 |
| Macular Degeneration |
46 |
| Maple Syrup Urine Disease (MSUD) |
21 |
| Marfan Syndrome (MFS) |
41 |
| Mastocytosis (Mast Cell Activating Disease, MCAD) |
126 |
| McCune-Albright Syndrome (MAS) |
7 |
| Meniere’s Disease (MD) |
44 |
| Mental Retardation |
26 |
| Microcephaly |
22 |
| Migraine |
749 |
| Mitochondrial Disease |
111 |
| Mixed Connective Tissue Disease (MCTD) |
81 |
| Moebius Syndrome |
7 |
| Monoclonal gammopathy of undetermined significance (MGUS) |
8 |
| Mood Disorder |
33 |
| MTHFR |
36 |
| Mucopolysaccharidoses (MPS) |
53 |
| Multiple Sclerosis (MS) |
4547 |
| Multiple System Atrophy (MSA) |
7 |
| Muscular Dystrophy (MD) |
340 |
| Myasthenia Gravis (MG) |
141 |
| Myelodysplastic syndrome (MDS) |
57 |
| Myositis |
27 |
| Narcolepsy |
164 |
| NASH |
24 |
| Neuralgia |
74 |
| Neurofibromatosis (NF) |
52 |
| Neurogenic Bladder |
40 |
| Neuromyelitis optica (NMO) |
21 |
| Neuropathy |
369 |
| Neutropenia |
46 |
| Noonan Syndrome (NS) |
9 |
| Obesity |
137 |
| Obsessive Compulsive Disorder (OCD) |
138 |
| Oppositional Defiant Disorder (ODD) |
66 |
| Organ Transplant |
176 |
| Organic Acidemia (OA) |
45 |
| Osteoarthritis (OA) |
979 |
| Osteogenesis Imperfecta (OI) |
111 |
| Osteomyelitis (OM) |
4 |
| Osteopenia |
35 |
| Osteoporosis |
145 |
| Pancreatitis |
39 |
| Paralysis |
135 |
| Parkinson’s Disease (PD) |
660 |
| Paroxysmal Nocturnal Hemoglobinuria (PNH) |
90 |
| Pediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.(PANDAS) |
17 |
| Pemphigus |
107 |
| Pervasive Development Disorder (PDD, PDD-NOS) |
3 |
| Phenylketonuria (PKU) |
20 |
| Pheochromocytoma (PCC) |
13 |
| Pierre Robin Sequence (PRS) |
17 |
| Pitt-Hopkins Syndrome (PTHS) |
6 |
| Plantar Fasciitis (PF) |
24 |
| Polychrondritis |
15 |
| Polycystic Ovarian Syndrome (PCOS) |
257 |
| Polycythemia Vera (PV) |
53 |
| Polymicrogyria (PMG) |
13 |
| Polymyositis (PM) |
12 |
| Pompe Disease |
38 |
| Posttraumatic Stress Disorder (PTSD) |
557 |
| Postural Orthostatic Tachycardia Syndrome (POTS) |
4 |
| Primary Biliary Cholangitis (PBC, Primary Biliary Cirrhosis) |
24 |
| Primary Ciliary Dyskinesia (PCD) |
4 |
| Primary Immunodeficiency (PID) |
202 |
| Primary Sclerosing Cholangitis (PSC) |
12 |
| Progressive Supranuclear Palsy (PSP) |
4 |
| Psoriasis Psoriatic Arthritis |
332 |
| Pulmonary Arterial Hypertension (PAH) |
830 |
| Pulmonary Fibrosis (PF) |
116 |
| Raynaud’s Syndrome |
207 |
| Restless Leg Syndrome (RLS) |
105 |
| Rett Syndrome (RTT) |
78 |
| Rheumatoid Arthritis (RA) |
657 |
| Rosacea |
18 |
| Sarcoidosis |
108 |
| Scheuermann’s Kyphosis |
5 |
| Schinzel-Giedion Syndrome (SGS) (SGS) |
3 |
| Schizencephaly |
25 |
| Schizophrenia |
191 |
| Sciatica |
55 |
| Scleroderma |
225 |
| Scoliosis |
230 |
| Sensory Processing Disorder (SPD) |
108 |
| Shaken Baby Syndrome (SBS) |
7 |
| Short Bowel Syndrome (SBS, Short Gut) |
54 |
| Sickle Cell Disease (SCD) |
587 |
| Sjogren’s Syndrome (SjS, SS) |
346 |
| Sleep Apnea (OSA) |
473 |
| Spina Bifida (SB) |
144 |
| Spinal Cord |
407 |
| Spinal Muscular Atrophy (SMA) |
408 |
| Stickler Syndrome |
21 |
| Stroke |
310 |
| Sturge Weber Syndrome (SWS) |
14 |
| Syncope |
41 |
| Syringomyelia |
68 |
| Tay Sachs (TSD) |
22 |
| Temporomandibular joint (TMJ) |
33 |
| Thoracic Outlet Syndrome (TOS) |
19 |
| Thrombocytopenia (TCP) |
9 |
| Thyroid Eye Disease (TED) |
12 |
| Tourette’s Syndrome (TS) |
49 |
| Traumatic Brain Injury (TBI) |
150 |
| Trisomy X (XXX) |
9 |
| Tuberous Sclerosis (TSC) |
222 |
| Ulcerative Colitis (UC) |
294 |
| Urea Cycle Disorder (UCD) |
38 |
| Uveitis |
21 |
| Vasculitis |
23 |
| Vertebral Artery Dissection (VAD) |
6 |
| Vertigo |
55 |
| Vision Impairment |
479 |
| Vitamin D Deficiency |
24 |
| Vitiligo |
33 |
| Von Willebrand Disease (VWD) |
363 |
| Waldenstrom’s Macroglobulinemia (WM) |
124 |
| Wegener’s Granulomatosis with Polyangiitis (GPA) |
14 |
| Williams Syndrome (WS) |
41 |
| Wilson’s Disease (hepatolenticular degeneration) |
27 |
| Wolff-Parkinson-White (WPW) syndrome |
16 |
| Wolf-Hirschhorn Syndrome (WHS) |
2 |
| X-Linked Hypophosphatemia (XLH) |
7 |
| Cancers | Patients/Caregivers |
| Adrenal Cortical Cancer (Adrenal Cortex Carcinoma) |
27 |
| Anal Cancer |
256 |
| Bile Duct (Cholangiocarcinoma) Cancer |
100 |
| Bladder Cancer |
284 |
| Bone Cancer |
218 |
| Brain and Spinal Cord Tumors in Adults |
591 |
| Breast Cancer |
8300 |
| Breast Cancer in Men |
48 |
| Cancer of Unknown Primary |
211 |
| Cervical Cancer |
554 |
| Colorectal (Colon) Cancer |
1643 |
| Endometrial (Uterine) Cancer |
893 |
| Esophagus (Esophageal) Cancer |
340 |
| Eye Cancer |
35 |
| Gallbladder Cancer |
53 |
| Head & Neck/Throat Cancer |
838 |
| Hodgkin Disease |
462 |
| Kidney Cancer |
378 |
| Leukemia |
879 |
| Liver Cancer |
232 |
| Lung Cancer |
1883 |
| Lung Carcinoid Tumor |
53 |
| Lymphoma of the Skin |
21 |
| Malignant Mesothelioma |
2 |
| Multiple Myeloma |
411 |
| Non-Hodgkin Lymphoma (NHL) |
1155 |
| Ovarian and Fallopian Tube Cancer |
1128 |
| Pancreatic Cancer |
564 |
| Penile Cancer |
5 |
| Pituitary Tumors |
16 |
| Prostate Cancer |
695 |
| Rare Cancers |
140 |
| Sarcoma – Adult Soft Tissue Cancer |
278 |
| Skin Cancer – Melanoma |
437 |
| Skin Cancer – Non-Melanoma |
145 |
| Small Intestine Cancer |
95 |
| Stomach Cancer |
200 |
| Testicular Cancer |
164 |
| Thymus Cancer |
40 |
| Thyroid Cancer |
433 |
| Vaginal Cancer |
54 |
| Vulvar Cancer |
75 |
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.
