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 5
Achondroplasia/Dwarfism 16
Acromegaly 9
Addison’s 57
ADHD 239
Albinism 24
Allergies 290
Alpha 1 Antitrypsin Deficiency 23
Alzheimer’s 190
ALS 30
Anemia 87
Angelman Syndrome 12
Ankylosing Spondylitis 200
Antiphospholoid Syndrome 11
Arthrogryposis Multiplex Congenita 35
Anxiety 380
Aplastic Anemia 100
Asthma 395
Atrial Fibrillation 55
Autism 252
Barth Syndrome 10
Behcet’s Disease 28
Bipolar Disorder 231
Borderline Personality Disorder 18
Cardiomyopathy 100
Caroli Disease 5
CDKL5 19
Celiac Disease 70
Cerebral Palsy 135
Chiari Malformation 159
Chronic Fatigue Syndrome 46
Chronic Pain, Back Pain 141
Cluster Headache 92
Complex Regional Pain Syndrome (CRPS) 40
Connective Tissue Disease 25
COPD 149
Craniosynostosis 15
Crohn’s 437
Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) 83
Cushing’s 98
Cyclic Vomiting Syndrome 23
Cystic Fibrosis 1442
Cystitis 28
Deep Vein Thrombosis 15
Degenerative Disc Disease 120
Deletion Duplication Syndromes 118
Depression 483
Dermatomyositis 29
Diabetes 854
Down Syndrome 42
Dravet Syndrome 10
Duchenne Muscular Dystrophy 44
Dwarfism 19
Eating Disorders 20
Eczema 51
Ehlers-Danlos Syndrome 429
Endometriosis 62
Eosinophilic Esophagitis 146
Epilepsy 1060
Epstein Barr Syndrome 5
Factor VII Deficiency 27
Factor V Leiden 27
Fabry Disease 40
Fatty Liver, NASH 23
Fatty Oxidation Disorder 33
Familial Adenomatous Polyposis 32
Fibrodysplasia Ossicfians Progressiva 9
Fibromyalgia 525
Friedreich’s Ataxia 23
Gastroparesis 108
Gaucher Disease 47
GERD 141
Glutaric Acidemia Type 1 13
Gout 14
Grave’s Disease 30
Gullain-Barre Syndrome 32
Hashimoto’s Disease 98
Hearing Loss 109
Heart/Cardio 540
Hemophilia A 687
Hemophilia B 239
Hepatitis C 111
Hepatolenticular Degeneration 11
Hereditary Angioedema (HAE) 20
Hidradenitis Suppurativa 22
High Blood Pressure 231
Hirschsprung’s Disease 14
HIV 179
Human Growth Hormone Deficiency 167
Huntington’s Disease 240
Hydrocephalus 147
Hypoplastic Heart Syndrome 51
Hypothyroidism 217
Idiopathic Thrombocytopenia Purpura 54
Infantile Spasms 24
Insomnia 46
Interstitial Cystitis 37
Interstitial Lung Disease 22
Intracranial Hypertension 57
Irritable Bowel Syndrome 104
Juvenile Idiopathic Arthritis 78
Kidney Disease 179
Klippel-Feil Syndrome 11
Lennox-Gastaut Syndrome 212
Lichen Sclerosis 5
Lissencephaly 10
Liver Disease (Not Hepatitis) 68
Lupus 506
Lyme Disease 33
Lymphedema 28
Macular Degeneration 8
Marfan Syndrome 29
Mastocytosis (Mast Cell Activation Disorder) 73
Meniere’s 28
Migraine 299
Mitochondrial Disease 75
Mixed Connective Tissue Disorder 50
Mucopolysaccharidosis (MPS) 48
Multiple Sclerosis 3373
Muscular Dystrophy 99
Myasthenia Gravis 45
Myelodysplastic Syndrome (MDS) 21
Narcolepsy 43
Neuralgia 50
Neurofibromatosis 31
Neuromyelitis Optica (NMO) 12
Neutropenia 40
Noonan Syndrome 10
Obsessive Compulsive Disorder (OCD) 33
Oppositional Defiant Disorder 18
Organ Transplant 92
Organic Acidemia 20
Osteoarthritis 252
Osteogensis Imperfecta 97
Osteoporosis 47
Oxidation/academia disorders (VLCAD, Glutaria Acidemia, etc.) 46
PANDAS 9
Parkinson’s 220
Paroxysmal Nocturnal Hemoglobinuria (PNH) 68
Pemphigus Vulgaris 62
Pheochromocytoma 12
Phenylketonuria (PKU) 9
Polychrondritis 12
Polycystic Ovarian Syndrome 141
Polycythemia Vera 34
Post Traumatic Stress Syndrome (PTSD) 119
Postural Orthostatic Tachycardia Syndrome (POTS) 178
Primary Immunodeficiency Disease 122
Psoriasis, Psoriatic Arthritis 163
Pulmonary Arterial Hypertension 407
Pulmonary Fibrosis 57
Raynaud’s Syndrome 124
Restless Leg Syndrome 35
Rett Syndrome 73
Rheumatoid Arthritis 260
Sarcoidosis 70
Schizophrenia 43
Scleroderma 154
Scoliosis 84
Sensory Processing Disorder 38
Sickle Cell Disease 359
Sheehan’s Syndrome 12
Short Bowel Syndrome 12
Sjogren’s Syndrome 234
Sleep Apnea 124
Spinal Muscular Atrophy 236
Spina Bifida 42
Spinal Cord Injury 60
Spinocerebellar Ataxia 39
Stickler Syndrome 16
Stroke 64
Sturge-Weber Syndrome 14
Syncope 19
Syringomyelia 59
Tay Sachs 22
Tetralogy of Fallot 20
Thoracic Outlet Syndrome 19
Tourette Syndrome 22
Traumatic Brain Injury 32
Transverse Myelitis 19
Trigeminal Neuralgia 46
Tuberous Sclerosis 142
Turner Syndrome 33
Ulcerative Colitis 79
Urea Cycle Disorders 40
Uveitis 14
Vision Impairment 57
Vitiligo 16
Von Willebrand Disease 301
Williams Syndrome 5
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.