Since the founding of LuMind Foundation a decade ago, the researchers receiving foundation grants are encouraged to share findings with others in their discipline and other important fields. That condition is based on the belief that collaborating yields better and faster research breakthroughs.
In that same spirit, LuMind Foundation is proud to be part of the DS Consortium, a public-private partnership between the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and a set of stakeholders interested in Down syndrome research.
“We all talk informally, but creation of the DS Consortium helped us come together to exchange information and work collaboratively on identifying and then developing approaches to issues of critical importance to the Down syndrome research effort,” said LuMind Foundation’s Chief Scientific Officer Dr. Michael Harpold. “When we collaborate as a group we can significantly facilitate and advance innovative ideas, research, and relationships. More can be accomplished with increased and focused interaction to benefit children and adults with Down syndrome.”
Through the initiative of Dr. Yvonne Maddox, then Deputy Director of the NICHD, the DS Consortium was kicked off in September 2011. As a long-time member of the Down syndrome research community, Dr. Harpold attended the inaugural meeting along with other research foundations, national advocacy groups, self-advocate representation, and medical and governmental organizations – all with an interest in Down syndrome research.
“The consortium fosters collaboration and discussion to improve outcomes for people and families with Down syndrome,” explained Dr. Melissa Parisi, Chief of the Intellectual and Developmental Disabilities Branch of the NICHD, the National Institutes of Health (NIH) division primarily tasked with Down syndrome research. “There was much discussion about the need for a patient registry in the group. NIH, together with the consortium, created a registry resource to connect the Down syndrome community with the researchers.”
That registry, DS-Connect™, now confidentially and securely holds basic medical and demographic information for more than 2000 people with Down syndrome. That data can then be utilized, with permission of the participants, to offer opportunities to join in clinical studies and trials. The de-identified information is being made available to the Down syndrome community, researchers and clinicians to provide insight to many medical concerns specific to people with Down syndrome.
Another Consortium goal was to design an updated NIH research agenda for Down syndrome. NIH, together with input from the Consortium members, developed the updated the NIH DS Research Plan for Down Syndrome and issued a draft report for public review in 2014.
“A major product of the Consortium so far has been involvement with the updated DS Research Plan,” said Dr. Parisi. “In the past we had a generic theme of ‘Living with Down Syndrome,’ but thanks to the insight from Dr. Harpold and others we added a module on “Down Syndrome and Aging” in direct response to those comments and received valuable feedback from the families.” The Down Syndrome and Aging section addresses the need for additional research areas as an individual with Down syndrome ages, particularly with respect to early onset Alzheimer’s disease.
“The consortium reflects a growing partnership,” added Dr. Sujata Bardhan, a Scientific Program Manager with the NICHD. “We are seeing huge benefits to other consortium members and the NIH through the Consortium. We are all reaping its benefits.”
Dr. Harpold says collaboration in the research world is critical because when researchers and clinicians work together to understand and answer complex questions, a small discovery in one location can lead to a bigger one elsewhere. The spirit of collaboration is key in the laboratory and also in the meetings of the Consortium. Some of the organizations in the DS Consortium provide overlapping services, but they don’t view themselves as competitors. Dr. Harpold says the collaboration enhances everyone’s effectiveness.
“We all participate in the DS Consortium because we believe in collaboration, not in unproductive competition. We have a common goal: to improve the health outcomes for people with Down syndrome,” said Dr. Harpold.
Learn more about the DS Consortium including seeing a list of all the member organizations, by visiting the NIH website.