A longtime participant in the DS Consortium and DS-Connect® Registry Governance Board, LuMind Foundation’s Dr. Harpold will lead the Board overseeing DS-Connect® as the registry moves into its second year.
Dr. Michael Harpold, chief scientific officer at LuMind Foundation, has accepted an invitation from the National Institutes of Health (NIH) to serve as Chair of the Registry Governance Board for DS-Connect®.
Dr. Harpold has been serving as an active representative on the Down Syndrome Consortium, the private-public partnership that worked with the NIH to create DS-Connect®, the Down syndrome registry launched by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) last year. DS-Connect® is a health data registry for people living with a diagnosis of Down syndrome (DS). Dr. Harpold has also been serving as an inaugural member of the DS-Connect® Governance Board.
“Dr. Harpold’s commitment to research in Down syndrome and his contributions to the registry have had a major impact on its success. We are very pleased to have him serve as chair of the DS-Connect Governance Board,” said Dr. Melissa Parisi of NICHD, who serves as director of the registry and Chair of the Down Syndrome Consortium.
Dr. Harpold succeeds Dr. Yvonne Maddox, who served as Deputy Director of the NICHD until her recent appointment to serve as Acting Director of the National Institute on Minority Health and Health Disparities by the NIH Director.
“I am very honored to be asked to serve as the new chair of the DS-Connect® Governance Board and to continue working together with my distinguished fellow Governance Board colleagues, those on the DS-Connect® Operations Board and NICHD as DS-Connect® expands offerings, including launching a Professional Portal for approved researchers, clinicians and health practitioners to access aggregate de-identified data as well as design, develop and undertake important new research and clinical studies,” said Dr.Harpold. “I especially thank Dr. Yvonne Maddox for all of her tireless efforts in making DS-Connect® a reality, and her dedicated leadership as the inaugural chair of the DS-Connect® Governance Board. DS-Connect® represents a long-needed and incredibly important resource for researchers, clinicians and all of the Down syndrome community.”
“Dr. Harpold is a recognized leader in the Down syndrome research community,” said LuMind Foundation Executive Director Carolyn Cronin. “His experience, expertise and willingness to collaborate and connect with researchers, individuals with Down syndrome and families with a loved one with Down syndrome are all valuable assets to our organization and the greater Down syndrome community.”
DS-Connect® is designed to connect its registered participants with information about the larger Ds community, including providing people with Ds and their family members with important knowledge about medical and demographic information, new research findings and treatments and opportunities for participating in new research studies and clinical trials. All the data is kept secure and confidential and registrants have direct control over their information and if or how often they are notified of research opportunities. DS-Connect® currently has more than 2200 people registered.