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.

Here are our current Canadian patient and caregiver counts:

 

Condition Patients/Caregivers

Cancers

Anal Cancer 6
Bladder Cancer 5
Bone Cancer 1
Brain/Spinal Cord 7
Breast Cancer 150
Cervical Cancer 12
Colorectal Cancer 38
Endometrial Cancer 8
Esophageal Cancer 2
Head/Neck/Throat 13
Hodgkin Disease 8
Kidney Cancer 6
Leukemia 11
Liver Cancer 4
Lung Cancer 36
Multiple Myeloma 7
Non-Hodgkin Lymphoma 26
Ovarian Cancer 14
Pancreatic Cancer 8
Prostate Cancer 7
Sarcoma – soft tissue 5
Skin Cancer – Melanoma 8
Skin Cancer – non-Melanoma 1
Stomach Cancer 2
Testicular Cancer 5
Thyroid Cancer 6
Vaginal Cancer 2

Non-Cancer Conditions

Addison’s Disease 4
ADHD 5
Ankylosing Spondylitis 8
Asthma 11
Autism 8
CIDP 4
Crohn’s Disease 13
Cushing’s Disease 7
Cystic Fibrosis 81
Deletion Duplication Syndrome 4
Diabetes 27
Ehlers-Danlos Syndrome 17
Epilepsy 15
Fibromyalgia 13
Heart Disease 7
Hemophilia 11
Hepatitis 7
Human Growth Hormone Deficiency 6
Hydrocephalus 5
Hypothyroidism 5
Juvenile Arthritis 8
Liver Disease 5
Lupus 14
Multiple Sclerosis 119
Osteoarthritis 14
Osteogenesis Imperfecta 5
Parkinson’s Disease 15
POTS 5
Raynaud’s Syndrome 5
Rheumatoid Arthritis 10
Scleroderma 7
Spinal Muscular Atrophy 12
Waldenstrom’s Macroglobulinemia 6

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.

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.