FSR’s Executive Director Ginger Spitzer recently attended the 2nd Annual CBI Patient Registry Summit in Philadelphia. The conference focused on the latest news about patient registries and their role in accelerating research.
The ongoing FSR Sarcoidosis Patient Registry closely aligns with what these experts say can make real progress in research. By collecting and organizing information on patient demographics, treatments options, organs affected, and more, registries like ours allow researchers to look for patterns in the data. FSR accepts data request applications from medical investigators who have specific plans for how to use the completely anonymous and de-identified data.
Patient registries are gaining wide attention based on recent technology improvements, as well as an increased demand for better ways to measure outcomes in research. They also have the potential to improve treatment decisions, through monitoring which medications are working for certain types of people.
Pharmaceutical companies and academia gain valuable knowledge from registry data that can help guide the future of research. FSR’s Patient Registry is right on target for advancing research – however, it is patients themselves who can provide the KEY to unlocking breakthroughs in the sarc world, by sharing their own data.
