Several members of Research Voice have served as community reviewers for the Clinical Research Committee (CRC) which funds academic research studies led by CF clinicians and researchers. Based on community input, the request for proposals sought an increased diversity in topic areas that were viewed as most important to the community. Community reviewers provided feedback on the feasibility and relevance to people with CF for each study proposal to help make a funding decision. Click here to view the list of studies that have been awarded a clinical research grant.

Seven members from Research Voice are joining 11 other community members to serve as community reviewers on the CRC and review clinical research grants for the fall cycle.

The FDA recently published a draft of their guidance document, Enhancing the Diversity of Clinical Trial Populations – Eligibility Criteria, Enrollment Practices, and Trial Designs. This document was developed to offer practical advice to sponsors of clinical trials on how to improve enrollment for rare disease drug trials and reduce barriers to clinical trial participation. To address the number of barriers that patients with CF face during the clinical trial enrollment and participation process, the CF Foundation submitted a letter that contained several recommendations for the FDA to bring to the attention of sponsors, including addressing challenges related to language barriers, reimbursement methods, reducing burden associated with trial visits, childcare costs, open-label studies, and pediatric trials consent. These recommendations were largely based on feedback from the community through previous surveys and focus groups about clinical trials. Click here to read the CF Foundation’s response to the draft.