The Mayo Clinic has partnered with CysticLife.org, a social network for the cystic fibrosis community, to conduct a large cystic fibrosis exercise study.
CysticLife.org says it strongly believes in Community Drive Research, noting in a statement: “Our community has brought together the best doctors and researchers in CF to study insights shared by patients that are often overlooked by the research ecosystem. CysticLife’s Community Powered Research Fund is designed to empower CF patients to take action instead of waiting for someone else to solve their problems.”
The exercise research project comes from a poll CysticLife conducted in late 2014 indicating members were particularly interested in finding ways to reduce the treatment burden and improve their quality of life, with exercise topping the list of potentially viable alternatives. “Sadly, no one wants to fund this kind of research,” Ronnie Sharpe, founder of CysticLife.org founder, said. “There is no financial incentive for companies to research this topic, so cystic fibrosis patients are on their own.”
Jessica Gladwell reports that in order to get the exercise research project underway, CysticLife sought the help of researchers and clinicians from around the country, including Stanford and Johns Hopkins universities, and found researchers at the Mayo Clinic who could conduct the study. The last step is to raise the $250,000 required to run the study, which she says the community is well on its way to raising.