New Review Highlights Evidence Gaps in Adult Down Syndrome Care
Press Release Date: March 20, 2026
A new systematic review, Medical Care for Adults With Down Syndrome, funded by the Patient-Centered Outcomes Research Institute (PCORI) and conducted through the Agency for Healthcare Research and Quality (AHRQ) finds recent increases in lifespan among individuals with Down syndrome have contributed to knowledge gaps and a lack of appropriate care for adults with the condition. Nearly 40 percent of individuals over age 26 continue receiving care from pediatricians, suggesting many adults may not be receiving age-appropriate medical services.
Down syndrome, the most common chromosomal condition in the United States, occurs in about one in 700 births and affects an estimated 250,000 people. Individuals with Down syndrome are living longer than ever before—now with a life expectancy of about 60 years—creating a new and urgent need for strong, evidence-based adult healthcare. PCORI commissioned this AHRQ study to help address these important issues. It is the first systematic review to examine screening and treatment for adults with Down syndrome. "This report helps lay the scientific foundation of care to improve care for a growing population of adults living with the condition in the United States," said AHRQ Director Roger D. Klein, M.D., J.D.
Research shows that adults with Down syndrome experience higher rates of certain health conditions, including Alzheimer's disease, sleep apnea, obesity, hypothyroidism, diabetes, cataracts, leukemia, osteoporosis, depression and obsessive-compulsive disorder. They also have lower rates of many solid tumor cancers, including breast, cervical, colorectal and lung cancer, and some cardiovascular diseases, highlighting the importance of tailored screening and treatment.
Investigators reviewed 36 studies on treatment interventions for adults with Down syndrome. Nearly half of the studies focused on dementia, primarily Alzheimer's disease. Other studies examined obesity, behavioral conditions, cardiovascular disease, sleep disorders and vision problems.
While evidence is limited, some studies reported improvements from medications used to treat Alzheimer's disease and depression, behavioral interventions for obesity, exercise-based therapies to support mobility and cognitive heath and treatments for sleep apnea, including CPAP (continuous positive airway pressure) machine therapy and surgery.
"The Department of Health and Human Services, AHRQ and the Trump Administration remain committed to advancing research and strengthening the evidence base to support high-quality, person-centered care for adults with Down syndrome," said Dr. Klein.
For more information about AHRQ Effective Health Care Program systematic reviews and this report, please visit the website: https://effectivehealthcare.ahrq.gov.
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Contact: AHRQ Press Office
