A study on Down syndrome specialty clinics published in 2021 estimated that less than 5% of adults with Down syndrome have access to a Down syndrome specialty clinic. This suggests that 95% of adults with Down syndrome likely receive care from health care providers who have seen a small number of individuals with Down syndrome in their clinics. Resources have been developed to support health care providers without extensive experience caring for people with Down syndrome. We have highlighted 5 of them below. 

1. Organization: Down Syndrome Medical Interest Group (DSMIG-USA) 

Group of health professionals from a variety of disciplines committed to promoting the optimal health care and wellness of individuals with Down syndrome across the life span. Qualified members can participate in the DSMIG-USA ListServ to ask and discuss clinical questions with colleagues and experts across the country.

2. Article: Medical Care of Adults with Down Syndrome 

A short 2-page article written by Brian Chicoine, MD, the Medical Director of the Adult Down Syndrome Center, and published in Illinois Family Physician. This "quick read" provides an overview of common characteristics, co-occurring health conditions, and health screening and promotion.

3. Guidelines: GLOBAL Medical Care Guidelines for Adults with Down Syndrome 

Evidence-based clinical guidelines that provide recommendations and statements of good practice to support primary care of adults with Down syndrome. The guidelines address behavior, dementia, diabetes, cardiovascular disease, obesity, atlantoaxial instability, osteoporosis, thyroid, and celiac disease.

4. Virtual Meetings: DSMIG-USA Project ECHO

Monthly virtual meetings for health care providers to learn and share information about the care of people with Down syndrome. It was developed to support health care providers who may not have much experience in caring for people with Down syndrome. This program provides an opportunity for these providers to seek input from expert providers with significant experience in caring for people with Down syndrome. 

5. Website: Adult Down Syndrome Center Resource Library

Our online library offers over 400 articles, webinars, visual supports, and videos on health for people with Down syndrome, families and caregivers, and health care professionals. The search bar can be used to find resources on specific topics of interest.