NGLY1.org president and co-founder, Matt Might, PhD, will be participating in the upcoming live web event “Aligning Incentives for Sharing Clinical Trial Data” hosted by the New England Journal of Medicine. The goal of the event is to produce proposals for how to align incentives in academic medicine that encourage data sharing and accelerating science.
According to Might, “There’s been controversy as of late around the need to encourage scientists to release their data in order to accelerate science overall. Many scientist shave objected on the grounds that they spent a lot of time collecting that data and should have priority in publishing on it. Patients sometimes object to their data not being shared because they feel that they put themselves at risk to have it collected in clinical trials. Data analysts want access to all data to confirm the results of studies and enables secondary findings. This summit is about aligning incentives between clinical trialists, data analysts and patients.”
This discussion is important to the rare disease community because “rare disease patients disproportionately rely on academic medicine for care, and they rely on science advancing as rapidly as possible in order to bring relief to their diseases,” says Might. By understanding the abilities and limitations of those in academic medicine, rare disease communities can better understand and develop stronger collaborative opportunities around clinical trials.