Recruitment procedures for descriptive socio-economic studies in rare diseases. The BURQOL-RD project

Background: Patient recruitment is a barrier that limits the power and validity of research findings in rare diseases (RD) research. We report the recruitment strategy carried out for the BURQOL-RD project in eight European countries with their corresponding results to gather socio-economic and health-related quality of life data of patients with 10 RD and their caregivers.Method: First, literature related to recruitment strategies for RD was reviewed, with a focus on descriptive studies and clinical trials. Second, the recruitment strategy for BURQOL-RD project was designed.Results: Findings from the literature showed that the most common recruiting strategies were the use of clinical and research networks and patient organizations (POs). The main BURQOL-RD recruitment strategy was driven, in every participant country, by the corresponding National Federation of RD by means of PO registries, e-mail and Internet-based questionnaires; providing a total of 3233 valid responses for the 10 selected RD in all ...