Recruitment and Retention Strategies for Rare Disease Trials

This guide outlines strategies for recruiting and retaining patients with rare diseases in clinical trials. It begins by discussing the challenges faced by patients, including the significant distances they must travel to clinical trial sites, which can average 177 miles in the U.S. and 136 miles globally. The document emphasizes the importance of patient-centric trial designs that incorporate in-home clinical visits to alleviate these burdens. It details how in-home healthcare providers (HCPs) can facilitate trial participation by conducting necessary procedures in a more comfortable environment for patients and their families. The guide also highlights the need for HCPs to establish trust and rapport with patients, which can enhance engagement and reduce dropout rates. Furthermore, it discusses the logistical considerations of in-home visits, including the need for proper training of HCPs and the management of medical supplies. The document concludes with a summary of MRN's experience in conducting over 140 rare disease trials and the positive outcomes of implementing these strategies.