DS-Connect®: The Down Syndrome Registry

Are you a self-advocate or a family member of someone with Down syndrome? We suggest joining the DS-Connect® Registry to securely add your or a loved one’s health info to help researchers learn more about Down syndrome. Once registered, you can also access useful resources like:

  • Healthcare providers who have experience treating people with Down syndrome
  • Learn about clinical trials in DS and how to take part
  • Info about researchers and their current projects

The studies below were provided by the DS-Connect® Registry and are currently enrolling.

Cognitive Change Study
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.
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Effects of Hypoglossal Nerve Stimulation on Cognition and Language in Down Syndrome and Obstructive Sleep Apnea
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.
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Safety and Efficacy of Tofacitinib for Immune Skin Conditions in Down Syndrome
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.
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