The Sudden Arrhythmia Death Syndromes (SADS) Foundation has been selected by the National Institutes of Health (NIH) to participate in a ground-breaking, two-year pilot study to collect de-identified patient clinical information for clinical research of rare diseases.
The SADS Foundation is an organization dedicated to saving lives and supporting families of children and young adults who are predisposed to sudden death due to heart abnormalities. The Foundation provides information, support and hope to thousands of families with children living with the health threat and is a leader in education, research and advocacy for people with genetic heart arrhythmias that can cause sudden deaths.
This pilot program is to establish a Global Rare Diseases Patient Registry and Data Repository (GRDR) as a shared and trusted resource for patient natural history information to accelerate research and provide information for advocacy groups. The goal of GRDR is to enable analyses of data across many rare diseases, including SADS conditions, to facilitate clinical trials and other studies. This registry database ultimately creates a structured system for patients and their personal data and medical information.
For more information on the GRDR, please visit www.grdr.info. For more information about the SADS Foundation, please visit www.StopSADS.org.
StopSADS.org 