DS-Connect®: The Down Syndrome Registry

This study, called DS-Connect®, is creating an online registry for people with Down syndrome. It's not testing a new medicine, but rather collecting health information to help researchers better understand Down syndrome and find people who might be a good fit for future studies or clinical trials. The goal is to learn more about the different health conditions that affect people with Down syndrome over time. Anyone with Down syndrome, including mosaic Down syndrome or partial trisomy 21, can participate if they are at least 18 years old and can give consent, or if a legal representative can give permission for them. The study aims to follow participants for up to 10 years.

Study design: This is an observational study, meaning it collects information without testing a specific intervention. It aims to include 100,000 participants.
What's involved: You would provide demographic and health information through an online survey tool. The study aims to collect this information over a period of up to 10 years.
Compensation: Not stated in the trial record.
Follow-up: The study plans to collect information and facilitate research participation for up to 10 years.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

DS-Connect®: The Down Syndrome Registry

Recruiting

Not specifiedAll AgesObservational

University of Colorado, Denver

~100,000 participants

Updated 2025-01-31 on ClinicalTrials.gov

At a glance

Recruiting sites

1 of 1 listed site is recruiting right now

RecruitingSuspended, closed, or not yet open

What they're measuring

To determine the prevalence of the various co-occurring conditions in Down syndrome.

Measured over Through study completion, up to 10 years

+1 more outcome measured

Conditions

Down Syndrome

Where it's being run

1 sites across 1 states

Colorado1

Study leadership

Joaquin M Espinosa, Ph.D. · PRINCIPAL_INVESTIGATOR · Linda Crnic Institute for Down Syndrome, University of Colorado Anschutz Medical Campus

Who to contact

Anne Fiala

[email protected]

(303) 724-6599

Email the study team

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Do you actually qualify for this trial?

Add a private profile and we'll compare every criterion below against your situation — and tell you which ones are met, uncertain, or excluding.

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Eligibility criteria

Inclusion

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.)

Exclusion

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.

What this trial measures

To determine the prevalence of the various co-occurring conditions in Down syndrome.Through study completion, up to 10 years
Participants in DS-Connect® will complete health history surveys regarding medical diagnoses and can update the surveys annually or whenever their health changes.
Facilitate participation in research for individuals with DS who may be eligible for research studies or new clinical trials.Through study completion, up to 10 years
Participants may choose to hear about Down syndrome research studies that may be relevant to their co-occurring conditions.

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