Expand Your Circle – A Solution For Recruiting And Retaining Rare Disease Patients

By Todd McGrath, Medical Research Network

Globally, millions of patients suffer from over 7,000 rare diseases with few or no regulated standards of care. Even some well-known diseases, like cystic fibrosis, are considered rare diseases because they involve a wide range of genetic variability that affects their treatment. Yet, clinical trials often fail to meet recruitment requirements because not enough patients can reach clinical trial sites. Recently, Medical Research Network analyzed data from 318 patients, over half of whom were engaged in rare disease trials and found that the average distance from clinical sites was 177 miles in the United States and 136 miles in the rest of the world. For rare disease patients and their families, driving hundreds of miles roundtrip for clinical trial appointments isn’t feasible.

Rare disease patients also face other challenges that make it hard to participate in trials. They may have severe physical limitations due to the disease and rely on caregivers for transportation, which limits their availability. Sponsors wishing to study rare diseases must focus on patient centricity because the best way to recruit patients for these clinical trials is to make it as easy as possible for them to participate. Decentralized clinical trials offer a patient-centered solution to recruiting and retaining rare disease patients.