DS-Connect®: The Down Syndrome Registry

Recruiting now

Conditions studied: Down Syndrome

In brief

The goal of this study is to develop a registry for Down syndrome (DS) to facilitate research participation by individuals with Down syndrome. DS-Connect® is an online survey tool designed to collect demographic data and health information from individuals with DS. It is open to all people with Down syndrome. The purposes of DS-Connect® are: 1. To identify the various phenotypic manifestations of DS. 2. To identify individuals with DS who may be eligible for research studies or new clinical trials, based on specific information about their diagnosis and health history.

Key facts

Study ID

NCT01950624

Run by

University of Colorado, Denver

People needed

100000

Starts

2013-09-06

Expected to finish

2035-06-01

Last updated by the study team

2025-01-31

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• 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.

You may not qualify if…

• 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 is running

• Linda Crnic Institute for Down Syndrome — Aurora, Colorado, United States (enrolling)

Full record on ClinicalTrials.gov

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