A registry for individuals with Down syndrome

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

DS-Connect® is an online registry designed to collect demographic and health information from individuals with Down syndrome. The registry aims to identify various phenotypic manifestations of Down syndrome and connect individuals with potential research studies or clinical trials based on their health history. By participating, individuals and their families can share valuable insights that contribute to a better understanding of Down syndrome and its co-occurring conditions. This initiative fosters collaboration between the NIH, families, and researchers to enhance the quality of care and research opportunities for this population.

Why it matters

Who can join: the full rules

INCLUSION CRITERIA:

* Adults (at least 18 years of age) with a diagnosis of DS (including mosaic DS or partial trisomy 21) who are capable of providing consent to participate, or for whom a legally authorized representative (LAR) may give permission on behalf of the individual to participate. Adults with DS who cannot consent for themselves but can provide assent would need to provide assent to their LAR.
* Children (up to age 18 years of age) with a diagnosis of DS. Parents/guardians may enter registry information and give permission to participate on behalf of their child; if the child is over 7 years of age and able to provide assent, they must do so. (Note: Once a child has reached age 18, he or she will be prompted to re-enroll into the registry as an adult, if he/she is able to provide informed consent or with the consent of his/her LAR if unable to re-enroll themselves.)

No individuals with DS will be excluded from taking part in DS-Connect based on age, race, ethnicity, or gender.

EXCLUSION CRITERIA:

* A person who does not have a diagnosis of DS (or mosaic DS or partial trisomy 21)
* Adults with DS who are not capable of providing informed consent or assent to participate and do not have a Legally Authorized Representative who can do so. In the case where an adults with DS is able to provide assent but does not do so, that adult will be excluded.
* A participant, parent, and/or LAR who cannot provide consent or does not read or understand a language that is available for the registry, either English or Spanish.
* A child with DS (between the ages of 7 and 18 years) who is capable of providing assent but does not do so.
* A child under the age of 18 years whose parents share joint custody and one parent indicates that they do not consent to the child's participation.

Where it's running

• Linda Crnic Institute for Down Syndrome
  Aurora, Colorado, United States Recruiting

Study contacts

• Principal investigator: Joaquin M Espinosa, Ph.D. — Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus
• Study coordinator: Anne Fiala
• Email: info@ds-connect.org
• Phone: (303) 724-6599

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Kinematic analysis of hand and arm movement in kids with Down syndrome, CP and healthy children

  This study tests how well an instrumented Box and Block Test and motion tracking can measure upper-limb movement in healthy kids and those with pyramidal hemisyndrome or Down syndrome.

  Recruiting IRCCS San Raffaele Roma · Rome, Italiy · NCT07875127

• Sensory integration to help balance and movement in kids with Down syndrome

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  Recruiting Cairo University · Cairo · NCT07785011

• Collaboration for Down Syndrome Progress (CDP) in people with Down syndrome

  A long-term study following people with Down syndrome of all ages to see how health and everyday life change over time.

  Recruiting RTI International · Orange, California and 15 other locations · NCT07625579

• JAK inhibitor treatment for Down syndrome in children and young adults

  This study tests whether 6 months of tofacitinib can help improve safety and neurodevelopment in people with Down syndrome aged 6 to 22, compared with placebo.

  Recruiting Phase 2 University of Colorado, Denver · Aurora, Colorado · NCT07598643

• Jump rope to improve navicular drop and foot posture in children with Down syndrome

  This project will test whether adding jump-rope exercises to play activities helps improve foot posture in 4–15-year-old children with Down syndrome who have navicular drop.

  Recruiting Riphah International University · Lahore, Punjab Province · NCT07428863

• Thymus removal and immune aging in people with Down syndrome

  This study will try to see if removing part of the thymus affects immune health over time in people aged 1 and older with Down syndrome, comparing those who had thymectomy to those who did not and to unaffected household relatives.

  Recruiting National Institutes of Health Clinical Center (CC) · Bethesda, Maryland · NCT07416201

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.