Recruiting for success in rare disease

The challenge

For market research and consultancy teams conducting research in the rare disease space, accessing the right respondents can feel like finding a needle in a haystack. Traditional panels of patients and providers rarely yield the target audiences in sufficient numbers for the types of issues that pharma clients wish to explore, and physician referrals have provided dwindling results in recent years.

For one recent project, our client was interested in the patient experience in a rare hereditary disease, to differentiate and drive uptake of their product vs. competitors. In addition, the client wanted to identify potential service elements that could be beneficial to patients beyond the treatment itself. To complete the recruitment, our colleagues at Just Worldwide built relationships with national patient support groups around the globe.

The solution

Although recruiting group discussions in rare diseases can be difficult, we held successful mini groups with patients. These proved particularly meaningful because, for some, it was the first time they had ever met other people with the same disease. Our client was able to see the extent of the emotional and physical burden of the disease – identifying key areas of unmet needs where they could provide solutions and add value to the patient experience.