“We are so pleased that the quality of our guideline rose to the occasion of being published in JAMA, and we are deeply grateful to our families and self-advocates for pushing us to work on this difficult project,” says Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation, or GLOBAL, which spearheaded the effort. “Now we can focus on collaborating with other Down syndrome and disability organizations as well as medical institutions to ensure clinicians are following our Global Guideline and measuring outcomes.”
Source: Global Down Syndrome Foundation
The GLOBAL Medical Care Guidelines for Adults with Down Syndrome provide first of-kind, evidence-based medical recommendations to support clinicians in their care of adults with Down syndrome. This life-changing resource as published in JAMA covers 9 topic areas deemed critically important for the health and well-being of adults with Down syndrome and outlines critical future research needs. Adults with Down syndrome and their caregivers should review the GLOBAL Guidelines with their clinicians to ensure they are receiving care meeting best-practice standards for adults with Down syndrome!
The result is a paper with 14 recommendations and four statements of good practice for clinicians treating those with Down syndrome that is published in the Journal of the American Medical Association. The strongest recommendation is for all people with Down syndrome to be screened for Alzheimer’s disease starting at age 40.
Two recommendations urge earlier and more frequent diabetes screening for those with the chromosomal disorder. Meanwhile, four other recommendations — managing risk factors for cardiovascular disease and stroke prevention, screening for obesity and evaluation for secondary causes of osteoporosis — paralleled guidance that’s already in place for people without Down syndrome.
“The recommendations address 10 selected high-priority areas, including mental health, Alzheimer-type dementia, diabetes, cardiovascular disease, stroke, obesity, osteoporosis, atlantoaxial instability, hypothyroidism, and celiac disease and represent an important effort to develop evidence-based clinical practice guidelines for primary care clinicians who provide care for adults with Down syndrome (Woodward, Jan, & Ciccarelli, 2020).”