New Program Developed by Marshfield Clinic Research Foundation will Support those with Rare Diseases
Friday, November 21st, 2014 -- 9:33 AM
-A computer software program developed at Marshfield Clinic Research Foundation soon will support the National Institutes of Health/National Center for Advancing Translational Sciences Global Rare Diseases Patient Registry Data Repository program, designed to advance research for rare diseases.Developed as a collaborative effort of MCRF's Biomedical Informatics Research Center and its Clinical Research Center, the software is available free of charge to institutions and patient advocacy organizations developing rare disease registries to be included in the GRDR.
About 7,000 rare diseases affect more than 350 million people worldwide, but because patients are located across the globe, it's extremely difficult for researchers to study these diseases. This software has the capability to bridge that gap.
It's not only patients of rare diseases who will benefit from the registry. Through application of scientific insights gained while studying rare diseases, program leaders aim to further research for common diseases as well.
Feel free to contact us with questions and/or comments.