Actively Recruiting
DS-Connect®: The Down Syndrome Registry
Led by University of Colorado, Denver · Updated on 2025-01-31
100000
Participants Needed
1
Research Sites
1134 weeks
Total Duration
On this page
Sponsors
U
University of Colorado, Denver
Lead Sponsor
L
Linda Crnic Institute for Down Syndrome
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
DS-Connect®: The Down Syndrome Registry
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Adults (18 years or older) with a diagnosis of Down syndrome or related conditions who can consent or have a legally authorized representative (LAR) to consent for them
- Adults with Down syndrome unable to consent but able to provide assent must assent alongside their LAR's consent
- Children (under 18 years) with Down syndrome whose parents/guardians can consent
- Children over 7 years old able to provide assent must do so
- No exclusion based on age, race, ethnicity, or gender
You will not qualify if you...
- Individuals without a diagnosis of Down syndrome, mosaic DS, or partial trisomy 21
- Adults with Down syndrome unable to consent or assent and without an LAR to consent
- Adults able to assent but who do not provide it
- Participants, parents, or LARs who cannot consent or do not understand English or Spanish
- Children aged 7 to 18 years able to assent but who do not do so
- Children under 18 with joint custody where one parent does not consent
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Linda Crnic Institute for Down Syndrome
Aurora, Colorado, United States, 80045
Actively Recruiting
Research Team
A
Anne Fiala
CONTACT
A
Angela Rachubinski, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
1
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