DS-Connect®: The Down Syndrome Registry (NCT01950624)
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Linda Crnic Institute for Down Syndrome — Aurora, Colorado
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (1 Sites)
- Linda Crnic Institute for Down Syndrome — Aurora, Colorado
📞 Contact the Study Coordinator
Phone: (303) 724-6599
Email: info@ds-connect.org
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
More studies in Down Syndrome
- Evaluating Treatment of ADHD in Children With Down Syndrome — Sacramento, California
- Effects of Hypoglossal Nerve Stimulation on Cognition and Language in Down Syndrome and Obstructive Sleep Apnea — Atlanta, Georgia
- Using Personal Mobile Technology to Identify Obstructive Sleep Apnea in Children With Down Syndrome (UPLOAD) — Ottawa, Ontario
- Executive Function Play Opportunities for Children With Down Syndrome — Fort Collins, Colorado
- Escalating Doses of Memantine in Down Syndrome (MEDS-123) — Cleveland, Ohio
- Natural History of Dysregulation and Aging of the Immune System in People With Trisomy 21 With and Without Thymectomy — Bethesda, Maryland
Explore by condition: All Down Syndrome clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.