Genetic Alliance Announces Registries for All
peter.suber's bookmarks 2013-04-06
"Registries for All (Reg4ALL) was introduced today at the 3rd annual CanLiv Research Symposium. Genetic Alliance is proud to present this exciting new resource, which enables individuals to participate in clinical trials and registries on their own terms. By giving people the tools to safely participate, we can expedite research and create more treatments for the benefit of all.
Researchers working to discover treatments face a problem: despite living in a world in which corporations use massive amounts of information on public spending habits to predict buying trends, behavior, and recently, even pregnancy, there is little available data on the diseases with which people live. The dichotomy may be driven by a desire for privacy about health information, but a new tool called Registries for All is building a consumer-driven, cross-disease health registry platform in which individuals have complete control over who sees what. Using a gamified interface, individuals can see how they compare to others.
By allowing individuals to share the information they specify, with the researchers and research organizations they chose, from specific academic medical centers to advocacy groups, Registries for All unlocks a trove of data of immense public health value. It will build communities of patients ready for the right trial to come to them...."