Cystic Fibrosis Foundation Therapeutics to Provide Alnylam with $1.5 Million in Funding for Discovery Efforts
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The Patient Registry is an invaluable tool for researchers conducting observational studies about people with CF in the U.S. About 50,000 individuals have been followed in the Registry since its inception in 1986; many of them have been included for over 20 years.
The Success with Therapies Research Consortium helps the clinical study of interventions so people with cystic fibrosis can improve the consistency of their day-to-day management of their CF to optimize health outcomes and quality of life.
CF MiniCon: Transplant is a virtual event for people with cystic fibrosis, their family members, and caregivers to learn about advanced lung disease and explore all stages of the transplant process.
CF Foundation-accredited care centers play an important role in research. They collect information on the health status of their patients with CF who agree to participate, and report that data to the CF Foundation Patient Registry. The information is available in aggregate to the CF community each year through the Data Report, the Highlights Report, and the Care Center Finder.
Because transplant is such a complex process, most transplant centers require that candidates gather the necessary social support to help navigate the transplant process.