DS-Connect®: The Down Syndrome Registry

Part of paid clinical trials in Aurora, Colorado.

Sponsor
University of Colorado, Denver
Study ID
NCT01950624
Status
Recruiting
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Conditions

  • Down Syndrome

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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 Dates

Start date
Sep 6, 2013
Status verified
Jan 2025
Primary completion
Jun 30, 2035
Completion
Jun 30, 2035

Study Design

Enrollment
100,000 participants (estimated)

Arms

  • Arm: Down syndrome cohort
    Individuals who have a diagnosis of complete trisomy 21, translocation Down syndrome or mosaic Down syndrome.

Primary Outcome Measure

To determine the prevalence of the various co-occurring conditions in Down syndrome. [ Time Frame: Through study completion, up to 10 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Linda Crnic Institute for Down SyndromeAuroraColorado80045
Anne Fiala
[email protected]
303-724-6599

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By research site
Linda Crnic Institute for Down Syndrome· Aurora, CO

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