With a record 45 clinical trials either ongoing or starting up in 2016, research coordinators and principal investigators throughout the Therapeutics Development Network took time out in San Antonio recently to discuss clinical research and put attendees through boot camp.
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Patty Burks, M.A., RN, CCRC
PTC Therapeutics has discontinued development of ataluren as a potential treatment for people with cystic fibrosis caused by a nonsense mutation. The Cystic Fibrosis Foundation is supporting efforts to pursue treatments for people with CF who have a nonsense, splicing or other rare mutations.
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3 min read
Dr. Skach discusses the latest advances in CF research and exciting new approaches to address the underlying cause of the disease.
Dora Nagy
Hear from John P. Clancy, M.D., the first plenary speaker at this year's NACFC, about recent advances in personalized medicine, which could allow clinicians to better tailor treatment to the individual with CF.
Susan Schept
The Foundation hosted a small conference that brought together CF scientists, clinical researchers, and biotechnology and pharmaceutical industry representatives. Learn more and watch a short video of attendees sharing their thoughts about the progress we are making in CF research.
Katherine Tuggle, Ph.D.
The Cystic Fibrosis Foundation’s Whole Genome Sequencing (WGS) project contains WGS data from over 5,000 people with cystic fibrosis in the United States that is linked with data from the CF Foundation Patient Registry.
6 min read
The CF Foundation Patient Registry collects information on the health status of people with cystic fibrosis who receive care in CF Foundation-accredited care centers and agree to participate in the Registry. This information is used to create CF care guidelines, assist care teams providing care to individuals with CF, and guide quality improvement initiatives at care centers. Researchers also use the Patient Registry to study CF treatments and outcomes and to design CF clinical trials.
The purpose of the Screening Improvement Program mechanism is to catalyze efforts aimed at improving the screening system used for early diagnosis.
3 min read
The Cystic Fibrosis Foundation is requesting applications with a Letter of Intent for innovative, multi-site quality improvement projects that aim to test tools and processes facilitating remote cystic fibrosis care delivery.
3 min read
This program is intended to facilitate research that will contribute to the development of new therapies or therapeutic strategies to treat cystic fibrosis with an emphasis on advancing CFTR gene repair and replacement approaches.
3 min read