Actively Recruiting
DS-Connect The Down Syndrome Registry for Research Participation and Health Data Collection
Led by University of Colorado, Denver · Updated on 2025-01-31
100000
Participants Needed
1
Research Sites
N/A
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
Researchers are creating DS-Connect , an online registry to support research participation for individuals with Down syndrome (DS). This registry collects detailed demographic and health information to better understand the various traits and co-occurring health conditions associated with DS. It aims to help identify individuals who may qualify for research studies or new clinical trials focused on Down syndrome. DS-Connect allows participants or their caregivers to provide information via a web-based platform without the need for in-person visits. The registry accepts data from individuals with complete trisomy 21, translocation, or mosaic Down syndrome. Participants can register at their convenience and submit condition-specific surveys, enabling ongoing data sharing and research engagement. Participants provide their health histories, medication use, and other biomedical information online. This information helps researchers determine the prevalence of co-occurring conditions in DS and supports recruitment for clinical trials. The project fosters communication among individuals with DS, families, researchers, and medical professionals, and it continues to collect data for up to 10 years to track long-term outcomes and research participation.
CONDITIONS
Brief 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, including mosaic or partial trisomy 21, who can consent or have a legally authorized representative to consent.
- Adults with Down syndrome who cannot consent but can provide assent must do so along with their representative's permission.
- Children with Down syndrome up to 18 years old, with parents or guardians providing permission.
- Children over 7 years old who can 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 provide informed consent or assent without a legally authorized representative.
- Adults who can assent but do not provide it.
- Participants, parents, or representatives who cannot consent or do not understand English or Spanish.
- Children aged 7 to 18 who can assent but 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
Your Study Journey
Duration - 2 to 4 weeks
Participants are screened for eligibility to participate in the trial.
Duration - Up to 10 years
Participants provide health and demographic information through a web-based Registry at their convenience, enabling long-term observation of health conditions associated with Down syndrome.
No in-person visits required; data submission via web platform
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
A
Angela Rachubinski, PhD
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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