DS-Connect®: The Down Syndrome Registry

The University of Alabama and University of California, Davis are recruiting for a study examining cognitive changes in teens and young adults aged 15-25 years with Down syndrome. They are trying to learn about changes in cognition (memory, thinking) and behavior that take place during adolescence and early adulthood in this group. We feel this information could someday lead to treatments to help individuals with Down syndrome stay healthy as they get older.

Researchers at Massachusetts General Hospital (MGH) and Massachusetts Eye and Ear Infirmary (MEEI) are studying new ways to treat obstructive sleep apnea in children and young adults with Down syndrome who have persistent obstructive sleep apnea despite prior tonsillectomy. They will be researching how placement of an investigational surgically implanted nerve stimulator for the purpose of treating severe obstructive sleep apnea (OSA) improves the neurocognition and expressive language skills in children with Down syndrome, ages 10-21.

Researcher Dr. Joaquin Espinosa at The Linda Crnic Institute for Down Syndrome, Colorado is trying to determine whether tofacitinib is a safe and effective treatment for immune skin conditions in adults with Down syndrome, and to further the understanding of the immune system in Down syndrome. Tofacitinib is an FDA-approved drug currently used to treat arthritisA form of joint disorder that involves inflammation, stiffness, and/or pain of one or more joints. and ulcerative colitis.