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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.

Assessing Executive Function in Children and Young Adults with Down Syndrome
Researchers at the Kennedy Krieger Institute are interested in learning how best to measure executive function in individuals with Down syndrome.
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Attitudes About Research Participation Among Individuals with Down Syndrome and Their Caregivers
Researchers at the Cleveland Clinic are asking caregivers of people with Down Syndrome to take an online survey to find why some people take part in research, and why some do not. Researchers also want to know what people like or do not like about research.
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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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Parental Vaccine Hesitancy for Adolescents with Down Syndrome
The research study “Parental Vaccine Hesitancy for Adolescents with Down Syndrome” at the Kent State University Department of Psychological Sciences and Akron Children’s Hospital is seeking parents/guardians of an adolescent with Down Syndrome to participate in a brief voluntary online research study.
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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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Sleep Study for Children with Down syndrome 6 to 25 years of age
The Children’s Hospital of Philadelphia is currently recruiting children/young adults with Down Syndrome ages 6 to 25 for a sleep research study. Researchers are investigating at-home sleep studies in children and young adults with Down syndrome.
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The Development of Spatial Abilities
Dr. Jennifer Yang in the psychology department at Montclair State University (Montclair, NJ) is currently conducting a research project titled "The Development of Spatial Abilities". If your child has Down Syndrome and is between 12 and 25 years old, you may be eligible to participate!
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The Human Trisome Project Biobank
Designed to be the largest and most comprehensive study of its kind, The Human Trisome Project will help us understand why individuals with Down syndrome (caused by trisomy of chromosome 21) are protected from some medical conditions, such as cancer, while highly predisposed to others, such as Alzheimer's disease and autoimmune disorders.
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Trial-Ready Cohort- Down Syndrome (TRC-DS)
The Alzheimer’s Clinical Trials Consortium-Down Syndrome (ACTC-DS) invites you to participate in the Trial-Ready Cohort- Down Syndrome (TRC-DS). TRC-DS is a community of potential clinical trial volunteers who could help find a cure for Alzheimer’s disease. The purpose of TRC-DS is to enroll healthy adults with DS across 15 international sites to determine longitudinal cognitive, clinical and biomarker trajectories in the persons with DS and to accelerate enrollment into clinical trials.
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University of Alabama Intellectual Disabilities Participant Registry (UAIDPR)
UAIDPR is a program in which individuals with DS participate in studies that help to increase understanding of DS and how to meet its challenges. Research studies often have difficulty finding participants; therefore, new families are greatly needed to complete this important work.
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