Webinar: “Connecting families and those with Down syndrome to research that INCLUDEs them”

September 27, 2019 @ 12:00 pm – 1:00 pm
Beth Sullivan





“The National Institutes of Health (NIH) has a longstanding program of research in Down syndrome (DS) to improve the quality of life for those with DS. In fiscal year (FY) 2018, in response to a Congressional directive, NIH launched a new DS research initiative called INCLUDE (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE).

The INCLUDE project (https://www.nih.gov/include-project), is addressing critical health and quality-of-life needs for individuals with DS, focusing on co-occurring conditions, such as Alzheimer’s disease, cancer, cardiovascular disease, immune system dysregulation, and autism, among others. NIH dedicated an additional $22.7 million for INCLUDE research in FY2018, bolstering total funding for DS research to $60 million last year. NIH Staff will provide updates on DS research funding in FY2019, highlighting some of the new INCLUDE projects.

In addition, NIH supports DS-Connect®: The Down Syndrome Registry(https://DSConnect.nih.gov), an online resource which collects basic health information about people with DS and connects them with research opportunities of interest to them. NIH Staff will describe how families can join DS-Connect and participate in INCLUDE-related research projects. In this way, families can help us better understand DS and develop effective treatments for DS-related conditions by being part of DS-Connect and informing researchers about the issues that matter to them.”

The webinar is at 12 pm ET, 11 am CT, 10 am MT, 9 am PT on Friday, Sept. 27.