History of Research and Education at the Center
"Documenting and sharing our knowledge is so important. First, families need it, so they can provide on-target care for their loved one with Down syndrome. Caregivers need it as well: I'm haunted by the vision of a primary care practitioner in a small town somewhere who is suddenly called on to care for his first patient with Down syndrome (I appreciate the challenge because more than 30 years ago I was that primary care provider in a small town treating his first adult with Down syndrome). We want to make it possible for that physician - and families everywhere - to access authoritative information and tools they need to provide good care. Changing the landscape for care nationally is within our reach - and research is what will allow us to tip those dominoes."
- Brian Chicoine, MD, Medical Director
Started in 1992, the Adult Down Syndrome Center was the first and remains the largest clinic for adolescents and adults with Down syndrome. This experience has given the ADSC the opportunity to gain extensive knowledge about caring for individuals with DS. Sharing what we have learned has always been part of the mission. We have done that by presenting at conferences, teaching residents and medical students, writing articles and books, offering educational programming, developing patient education materials for people with Down syndrome, and more.
In 2015, these efforts were formalized and expanded through the launch of the Research and Education Initiative, which allows us to use this experience to lead patient-centered research and education focused on improving quality of life for and with people with DS. Recent and current projects include participating in a clinical trials network, contributing to healthcare guidelines for adults with DS, writing articles and books, and studying the use of videos featuring people with DS for health education.