The Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) has received new datasets from the Cystic Fibrosis Therapeutics Development Network (TDN), promising to expedite research and development of new therapies for cystic fibrosis (CF).
The TDN, known for its clinical trials network evaluating the safety and effectiveness of new CF therapies, is funded by the Cystic Fibrosis Foundation and coordinated by the Seattle Children’s Research Institute.
Collaboration to Tackle CF
"We deeply value the collaboration with the Cystic Fibrosis Therapeutics Development Network and Seattle Children’s," said Alexandre Bétourné, PhD, executive director at RDCA-DAP. "Enhancing our collective capabilities to tackle CF and reinforcing our platform’s role in accelerating new therapies stands as a pivotal development in our partnership. Integrating these and future datasets into RDCA-DAP marks a crucial advancement in our efforts to effectively combat rare disease."
About RDCA-DAP
The RDCA-DAP, run by the nonprofit Critical Path Institute (C-Path), is funded by the U.S. Food and Drug Administration. It provides a centralized platform of patient data, including clinical trials, long-term observational studies, patient registries, and real-world data, such as electronic health records, for various rare diseases.
By sharing data across members, the RDCA-DAP aims to accelerate understanding of disease progression, contribute to the design of new clinical outcome measures and disease biomarkers, and develop disease mathematical models and new clinical trial designs.
Impact on CF Research
"These efforts highlight our shared goal to foster innovative treatments for cystic fibrosis. By contributing data from CF research to this powerful platform, we will enable researchers worldwide to access and leverage data that can lead to breakthroughs in CF care," said JP Clancy, MD, senior vice president of clinical research at the Cystic Fibrosis Foundation.
Nicole Mayer Hamblett, PhD, co-executive director, CF Therapeutics Development Network Coordinating Center, Seattle Children’s Research Institute, and professor of pediatrics at the University of Washington, added, "Innovative study designs utilizing existing data will be needed to advance therapeutic development for rare diseases, including CF, and the RDCA-DAP will be an important platform for supporting trial planning and execution."
Several organizations have contributed data to the RDCA-DAP, which is then made available to initiative partners. Those interested in joining RDCA-DAP can find more information at C-path’s site online.
