The patient-centered outcomes research (PCOR) training manual provides discrete steps, tools, and resources that CF Center research teams can take to integrate and maintain patient/caregiver-partners in CF research.
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The Cystic Fibrosis Foundation's Research Development Programs are a network of basic science research centers around the country that brings together leading scientists to pool their talents and advance understanding of the basic science of CF and the complex ways the disease affects different parts of the body.
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.
In a strong show of support for the CF community, the U.S. Senate Appropriations Committee recently expressed the importance of innovative cystic fibrosis research in a spending bill, which is part of the federal budget under consideration right now in Congress.
Funding will support improved detection, diagnosis, prevention, and treatment of infections related to cystic fibrosis.
The Cystic Fibrosis Foundation invited more than 100 scientists to its research conference in Savannah, Ga., last month to discuss recent advancements in gene therapy, gene editing and stem-cell biology and how these new technologies could be applied to finding a one-time cure for cystic fibrosis.