DS-Connect®: The Down Syndrome Registry
University of Colorado, Denver
Summary
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.
Description
The DS-Connect® Registry is a unique resource that enables communication and sharing of ideas among the NIH, individuals with DS and their families, national and international organizations interested in DS, and a diverse group of professionals involved in scientific research and medical care benefiting the population with DS. By providing information on their demographics, health histories, medications, and other relevant biomedical information, self-advocates and their families provide an unprecedented view of this genetic condition that can inspire new scientific inquiries, clinical researc…
Eligibility
- Age range
- Not specified
- Sex
- All
- Healthy volunteers
- No
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 o…
Location
- Linda Crnic Institute for Down SyndromeAurora, Colorado