Rare Disease Patient Research

Patient research presents a unique set of challenges to market researchers.  The language must be modified to be less technical and jargon-free, the pace and flow must be altered to more closely resemble a discussion rather than a research study, answers may be imprecise or contradictory and must be interpreted through that lens.  However, as challenging as these problems may be, one of the biggest is accessing patients.

For years Cadence Market Research looked to panel companies to assist with identifying and recruiting patients for our studies.  Often times, it was hit or miss depending on various factors.  It was a vulnerable position to be in and so we decided to tackle it directly.  Over time, Cadence developed a unique talent in leveraging social media to gain access to difficult to find patients.  Our customized approach includes extensive background research, monitoring social media sites, and direct outreach.  Our approach has proven so successful that panel companies have approached us with some of their most difficult searches.

We have worked on a variety of rare diseases including Periodic Paralysis, Pouchitis, Alport Syndrome, Cushings Syndrome, and Leigh Syndrome.