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  127

Non-Cancer Conditions

22q Deletion Syndrome/DiGeorge Syndrome 28
Achalasia 6
Achondroplasia/Dwarfism 18
Acromegaly 9
Addison’s 62
ADHD 265
Albinism 24
Allergies 293
Alpha 1 Antitrypsin Deficiency 25
Alzheimer’s 217
ALS 31
Anemia 95
Angelman Syndrome 12
Ankylosing Spondylitis 199
Antiphospholoid Syndrome 12
Arthrogryposis Multiplex Congenita 35
Anxiety 405
Aplastic Anemia 100
Asthma 431
Atrial Fibrillation 58
Autism 276
Barth Syndrome 10
Behcet’s Disease 29
Bipolar Disorder 248
Borderline Personality Disorder 21
Cardiomyopathy 110
Caroli Disease 6
CDKL5 20
Celiac Disease 73
Cerebral Palsy 143
Chiari Malformation 161
Chronic Fatigue Syndrome 49
Chronic Pain, Back Pain 149
Cluster Headache 92
Complex Regional Pain Syndrome (CRPS) 40
Connective Tissue Disease 25
COPD 170
Craniosynostosis 14
Crohn’s 440
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 79
Cushing’s 98
Cyclic Vomiting Syndrome 23
Cystic Fibrosis 1446
Cystitis 28
Deep Vein Thrombosis 15
Degenerative Disc Disease 128
Deletion Duplication Syndromes 119
Depression 516
Dermatomyositis 27
Diabetes 944
Down Syndrome 49
Dravet Syndrome 16
Duchenne Muscular Dystrophy 45
Dwarfism 19
Eating Disorders 21
Eczema 59
Ehlers-Danlos Syndrome 430
Endometriosis 69
Eosinophilic Esophagitis 147
Epilepsy 1077
Epstein Barr Syndrome 8
Factor VII Deficiency 26
Factor V Leiden 28
Fabry Disease 40
Fatty Liver, NASH 23
Fatty Oxidation Disorder 34
Familial Adenomatous Polyposis 31
Fibrodysplasia Ossicfians Progressiva 9
Fibromyalgia 553
Friedreich’s Ataxia 23
Gastroparesis 108
Gaucher Disease 47
GERD 148
Glaucoma 9
Glutaric Acidemia Type 1 16
Gout 16
Grave’s Disease 29
Guillain-Barre’ Syndrome 32
Hashimoto’s Disease 107
Hearing Loss 113
Heart/Cardio 570
Hemophilia A 689
Hemophilia B 265
Hepatitis C 114
Hepatolenticular Degeneration 11
Hereditary Angioedema (HAE) 22
Hidradenitis Suppurativa 22
High Blood Pressure 264
Hirschsprung’s Disease 14
HIV 186
Human Growth Hormone Deficiency 166
Huntington’s Disease 241
Hydrocephalus 148
Hypoplastic Heart Syndrome 54
Hypothyroidism 234
Immune Thrombocytopenia Purpura (ITP) 56
Infantile Spasms 24
Insomnia 50
Interstitial Cystitis 36
Interstitial Lung Disease 22
Intracranial Hypertension 55
Irritable Bowel Syndrome 114
Juvenile Idiopathic Arthritis 78
Kidney Disease 192
Klippel-Feil Syndrome 11
Lennox-Gastaut Syndrome 221
Lichen Sclerosis 5
Lissencephaly 10
Liver Disease (Not Hepatitis) 74
Lupus 524
Lyme Disease 35
Lymphedema 29
Macular Degeneration 8
Marfan Syndrome 29
Mastocytosis (Mast Cell Activation Disorder) 73
Meniere’s 30
Migraine 326
Mitochondrial Disease 75
Mixed Connective Tissue Disorder 50
Mucopolysaccharidosis (MPS) 48
Multiple Sclerosis 3522
Muscular Dystrophy 102
Myasthenia Gravis 48
Myelodysplastic Syndrome (MDS) 21
Narcolepsy 43
Neuralgia 50
Neurofibromatosis 29
Neuromyelitis Optica (NMO) 12
Neutropenia 40
Noonan Syndrome 10
Obsessive Compulsive Disorder (OCD) 37
Oppositional Defiant Disorder 19
Organ Transplant 94
Organic Acidemia 19
Osteoarthritis 283
Osteogensis Imperfecta 96
Osteoporosis 48
Oxidation/academia disorders (VLCAD, Glutaria Acidemia, etc.) 46
PANDAS 9
Parkinson’s 228
Paroxysmal Nocturnal Hemoglobinuria (PNH) 67
Pemphigus Vulgaris 64
Pheochromocytoma 13
Phenylketonuria (PKU) 10
Polychrondritis 12
Polycystic Ovarian Syndrome 114
Polycythemia Vera 34
Post Traumatic Stress Syndrome (PTSD) 125
Postural Orthostatic Tachycardia Syndrome (POTS) 179
Primary Immunodeficiency Disease 123
Psoriasis, Psoriatic Arthritis 166
Pulmonary Arterial Hypertension 407
Pulmonary Fibrosis 58
Raynaud’s Syndrome 128
Restless Leg Syndrome 41
Rett Syndrome 75
Rheumatoid Arthritis 280
Sarcoidosis 71
Schizophrenia 48
Scleroderma 152
Scoliosis 89
Sensory Processing Disorder 38
Sickle Cell Disease 385
Sheehan’s Syndrome 13
Short Bowel Syndrome 12
Sjogren’s Syndrome 251
Sleep Apnea 129
Spinal Muscular Atrophy 234
Spina Bifida 45
Spinal Cord Injury 68
Spinocerebellar Ataxia 40
Stickler Syndrome 16
Stroke 71
Sturge-Weber Syndrome 14
Syncope 19
Syringomyelia 56
Tay Sachs 22
Tetralogy of Fallot 21
Thoracic Outlet Syndrome 19
Tourette Syndrome 22
Traumatic Brain Injury 40
Transverse Myelitis 21
Trigeminal Neuralgia 46
Tuberous Sclerosis 140
Turner Syndrome 33
Ulcerative Colitis 83
Urea Cycle Disorders 35
Uveitis 12
Vision Impairment 62
Vitiligo 16
Von Willebrand Disease 296
Williams Syndrome 6
Wilson’s Disease 10
Wolff-Parkinson-White (WPW) Syndrome 6
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.