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
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 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.
I have had a fortunate life with cystic fibrosis given the fact that I married, had two kids, and a career. However, with increasing — and sometimes bewildering — health issues, I’m beginning to wonder whether it’s my CF or just aging, or something in between.
Melissa Shiffman
People like me are living longer — median survival for someone with cystic fibrosis is now 56 thanks to research and care. But as I grow older, my health is getting more complicated and I'll need my care to keep up.
Art Brace
The third plenary at this year’s North American Cystic Fibrosis Conference focused on the changing needs of the CF population that are compelling an evolution in CF care. As a person with CF, this evolution in care directly affects me as I face the challenges of living longer with this disease.
Meagan Tenyer
Throughout my life with cystic fibrosis, I never thought about the prospect that I would outlive my loved ones. Now that I have attended some of their funerals, the thought of my own mortality has caught up with me.
Richard Caldwell
Now that I’m in my 40s and post-lung transplant, I’m beginning to embrace the realities of aging with cystic fibrosis. Despite the gray hairs and deepening wrinkles, I know that I am lucky to be looking forward to mammograms and menopause.
Larissa Marocco