Research Volunteers Needed!

Our research team is composed of enthusiastic healthcare providers committed to innovation in Down syndrome research. Our team is motivated to offer research opportunities that can help maximize the life potential for all people with Down syndrome. We are excited to offer both in person and virtual research opportunities. For our in-person research, we have comprehensive COVID safety protocols in place. We are proud to currently offer families the following research opportunities:

• LIFE-DSR Trial: The Down Syndrome Program is one of the study centers for a research study led by LuMind IDSC. This study, called the Longitudinal Investigation for Enhancing Down Syndrome Research (LIFE-DSR) is an observational investigation which aims to learn more about the behavioral, cognitive, and health changes that occur in people with Down syndrome as they age, particularly focused on how this relates to the development of Alzheimer’s. Each participant will undergo a routine health exam including blood collection and will take cognitive and behavioral evaluations at each visit. Visits include a baseline evaluation followed by a 1-year then a 2-year follow-up visit. If you or a loved one is over the age of 25 and has Down Syndrome please consider joining this ground-breaking study. To learn more information about joining, please email LIFE-DSR@partners.org or call 617-726-6297.
• Social Networks Survey: Our new entirely virtual research study is a survey we have developed that measures individuals’ social networks. A social network is the collection of friends and family with whom you engage on a regular basis. The study includes one 30-minute interview with a Study Coordinator, during which, we will ask the adult with Down syndrome basic questions about him/herself and the people with whom he/she regularly connects. This interview will take place in a virtual Zoom session, ​enabled with extra security measures from our hospital. A caregiver will also be asked to complete a 30-minute electronic questionnaire. A year after the first study visit the questionnaire will be repeated for both the participant and the caregiver. Our Program is looking for volunteers with Down syndrome, aged 25 years and older, along with a study partner for this research study. Please email khaugen@mgh.harvard.edu or call 617-726-6297 if you are interested in participating.

• Developing a Health Instrument Focus Groups: Primary caregivers and individuals with Down syndrome are asked to participate in a virtual 90-minute focus group to discuss the concept of health for Down syndrome. Creating such an instrument will provide a barometer of the current state of health for DS and hold use in future research. We are creating an instrument that directly assesses health in DS – the Down syndrome Health Instrument (DHI). Participation in the focus group will provide us with insight needed to create the Down syndrome Health Instrument (DHI). The goal of the DHI is to accurately measure the current health of an individual with Down syndrome. If you are interested, please fill out this eligibility questionnaire: https://is.gd/FocusGroupInterest.