For Biopharma and Market Researchers

 Recruiting patients and caregivers in rare and orphan diseases for market research, post-marketing surveillance studies, and outcomes studies has been a challenge over the years. Prevalence rates are small enough that the passive approach of the large consumer panels can’t recruit sufficient sample. We’ve learned through experience that an active approach is necessary. We:

  • Partner with advocacy groups
  • Attend patient-oriented events
  • Obtain patient referrals to other patients
  • Use social media (Facebook, Twitter, etc.)

This active approach takes time. We invest the time now so patient panels and caregiver panels are ready when you need them. And it doesn’t apply just to patients with rare disease — it works with other special patient populations where an active recruiting approach is needed.

Our partnership with WhatNext, the exclusive social health network of the American Cancer Society, makes available 32,000 cancer patients and caregivers for qualitative and quantitative research.

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

Condition Patients/Caregivers

Cancers

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
 Waldenstrom’s Macroglobulinemia  128

Non-Cancer Conditions

22q Deletion Syndrome/DiGeorge Syndrome 28
Achalasia 7
Acromegaly 9
Addison’s 65
ADHD 287
Albinism 24
Allergies 307
Alpha 1 Antitrypsin Deficiency 25
Alzheimer’s 247
ALS 33
Anemia 102
Angelman Syndrome 14
Ankylosing Spondylitis 205
Antiphospholoid Syndrome 12
Arthrogryposis Multiplex Congenita 36
Anxiety 426
Aplastic Anemia 100
Asthma 467
Atrial Fibrillation 62
Autism 295
Barth Syndrome 10
Behcet’s Disease 29
Bipolar Disorder 266
Borderline Personality Disorder 21
Cardiomyopathy 109
Caroli Disease 6
CDKL5 20
Celiac Disease 75
Cerebral Palsy 177
Chiari Malformation 165
Chronic Fatigue Syndrome 53
Chronic Pain, Back Pain 165
Cluster Headache 94
Complex Regional Pain Syndrome (CRPS) 44
COPD 195
Craniosynostosis 14
Crohn’s 448
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 79
Cushing’s 100
Cyclic Vomiting Syndrome 24
Cystic Fibrosis 1449
Cystitis 28
Deep Vein Thrombosis 16
Degenerative Disc Disease 137
Deletion Duplication Syndromes 125
Depression 551
Dermatomyositis 27
Diabetes 1083
Down Syndrome 53
Dravet Syndrome 16
Duchenne Muscular Dystrophy 56
Dwarfism 19
Eating Disorders 21
Eczema 65
Ehlers-Danlos Syndrome 443
Endometriosis 73
Eosinophilic Esophagitis 152
Epilepsy 1108
Epstein Barr Syndrome 8
Factor VII Deficiency 26
Factor V Leiden 29
Fabry Disease 55
Fatty Liver, NASH 23
Fatty Oxidation Disorder 37
Familial Adenomatous Polyposis 31
Fibrodysplasia Ossicfians Progressiva 9
Fibromyalgia 588
Friedreich’s Ataxia 25
Gastroparesis 115
Gaucher Disease 48
GERD 157
Glaucoma 9
Glutaric Acidemia Type 1 16
Gout 19
Grave’s Disease 31
Guillain-Barre’ Syndrome 34
Hashimoto’s Disease 114
Hearing Loss 124
Heart/Cardio 610
Hemophilia A 703
Hemophilia B 323
Hepatitis 139
Hepatolenticular Degeneration 11
Hereditary Angioedema (HAE) 23
Hidradenitis Suppurativa 24
High Blood Pressure 299
Hirschsprung’s Disease 14
HIV 193
Human Growth Hormone Deficiency 168
Huntington’s Disease 242
Hydrocephalus 151
Hypoplastic Heart Syndrome 54
Hypothyroidism 254
Immune Thrombocytopenia Purpura (ITP) 56
Infantile Spasms 25
Insomnia 54
Interstitial Cystitis 36
Interstitial Lung Disease 22
Intracranial Hypertension 55
Irritable Bowel Syndrome 120
Juvenile Idiopathic Arthritis 79
Kidney Disease 203
Klippel-Feil Syndrome 11
Lennox-Gastaut Syndrome 222
Lichen Sclerosis 5
Lissencephaly 10
Liver Disease (Not Hepatitis) 82
Lupus 541
Lyme Disease 35
Lymphedema 32
Macular Degeneration 12
Maple Syrup Urine Disease 5
Marfan Syndrome 29
Mastocytosis (Mast Cell Activation Disorder) 89
Meniere’s 30
Migraine 344
Mitochondrial Disease 77
Mixed Connective Tissue Disorder 51
Mucopolysaccharidosis (MPS) 48
Multiple Sclerosis 3792
Muscular Dystrophy 121
Myasthenia Gravis 50
Myelodysplastic Syndrome (MDS) 21
Narcolepsy 44
Neuralgia 54
Neurofibromatosis 30
Neuromyelitis Optica (NMO) 14
Neutropenia 40
Noonan Syndrome 10
Obsessive Compulsive Disorder (OCD) 38
Oppositional Defiant Disorder 19
Organ Transplant 107
Organic Acidemia 19
Osteoarthritis 314
Osteogensis Imperfecta 98
Osteoporosis 52
Oxidation/academia disorders (VLCAD, Glutaria Acidemia, etc.) 46
PANDAS 9
Parkinson’s 285
Paroxysmal Nocturnal Hemoglobinuria (PNH) 67
Pemphigus Vulgaris 65
Pheochromocytoma 13
Phenylketonuria (PKU) 10
Pitt-Hopkins Syndrome 6
Polychrondritis 12
Polycystic Ovarian Syndrome 116
Polycythemia Vera 34
Post Traumatic Stress Syndrome (PTSD) 133
Postural Orthostatic Tachycardia Syndrome (POTS) 192
Primary Immunodeficiency Disease 125
Psoriasis, Psoriatic Arthritis 170
Pulmonary Arterial Hypertension 409
Pulmonary Fibrosis 58
Raynaud’s Syndrome 131
Restless Leg Syndrome 41
Rett Syndrome 75
Rheumatoid Arthritis 301
Sarcoidosis 73
Schizophrenia 52
Scleroderma 154
Scoliosis 95
Sensory Processing Disorder 38
Sickle Cell Disease 389
Sheehan’s Syndrome 13
Short Bowel Syndrome 13
Sjogren’s Syndrome 254
Sleep Apnea 141
Spinal Muscular Atrophy 237
Spina Bifida 54
Spinal Cord 83
Spinocerebellar Ataxia 50
Stickler Syndrome 17
Stroke 91
Sturge-Weber Syndrome 14
Syncope 20
Syringomyelia 57
Tay Sachs 22
Tetralogy of Fallot 21
Thoracic Outlet Syndrome 19
Tourette Syndrome 22
Traumatic Brain Injury 52
Transverse Myelitis 21
Trigeminal Neuralgia 49
Tuberous Sclerosis 140
Turner Syndrome 33
Ulcerative Colitis 89
Urea Cycle Disorders 35
Uveitis 12
Vision Impairment 82
Vitiligo 17
Von Willebrand Disease 304
Williams Syndrome 6
Wilson’s Disease 10
Wolff-Parkinson-White (WPW) Syndrome 7
X-Linked Hypophosphatemia 7

Nurses, Social Workers, Providers

Cystic Fibrosis HCPs 62
Hemophilia Treatment Center  66
HIV Providers 18
Pulmonary Nurses 12
Sickle Cell Nurses 11

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.

Learn more if you are a pharmaceutical or biotech company, or a market researcher.