It was developed by the Global Down Syndrome Foundation (GLOBAL), a leading nonprofit and advocacy organization focused on improving the health of people with the condition. The foundation worked with the clinical directors of eight of the largest Down syndrome medical centers as well as other experts, in consultation with adults with Down syndrome, their family members and other advocates.
The family publication distills the guidelines that were first published for physicians in a peer-reviewed article in JAMA.
Recommendations touch on the nine most common types of health problems faced by adults with Down syndrome: behavioral issues, dementia, diabetes, cardiovascular disease, obesity, instability of the bones at the base of the skull and neck, osteoporosis, thyroid issues and celiac disease.
The guidelines reflect the importance of tailoring treatment for patients and avoiding misdiagnoses. Some risk factors are unclear, and some treatments can be dangerous. The foundation says several of the questions posed by the medical authors had no published research evidence — which officials said was proof of the disparities faced by people with Down syndrome.
Though it is the most common chromosomal disorder in the United States, affecting about 1 in every 700 babies born, Down syndrome research has historically been underfunded compared with other major genetic conditions. But that is changing because of self-advocacy and the efforts of parents, caretakers, physicians and others. Today, more research is being undertaken. Discrimination and disparities still exist, however. And some medical providers still rely on inaccurate or outdated information about the condition.
Want to take a look at the new guidelines? Visit bit.ly/DownGuidelines to download the free guide.
GLOBAL Medical Care Guidelines for Adults with Down Syndrome