Drive Down Syndrome Research With Your Unique Story

This registry is under review for potential modification in compliance with Administration directives.

You hold the key to longer and healthier lives for all people with Down syndrome

DS-Connect®: The Down Syndrome Registry enables people with Down syndrome and their families to contribute to research studies, connect with Down syndrome researchers, and find resources and community events.

Make Discoveries Possible
Easily share important information with researchers
Know the Facts
Access expert-curated resources to guide healthcare decisions
Join the Community
Be a member of an active community with a common cause

How it Works

Surveys

Fill out confidential health-related surveys written by researchers who are studying Down syndrome.

Research

Researchers use data from thousands of participants to make discoveries.

Participate

When researchers design new studies or clinical trials, you can opt-in to be notified and participate.

Resources

Find expert news, links and events, and see how the data from studies you've completed drives discoveries.

Joining DS-Connect takes just a few minutes.

Unlock the power of Down syndrome today!

Join DS-Connect

Did you sign up for DS-Connect
before January 1, 2025?

The DS-Connect website has been updated, with exciting new features coming soon.

If you have a loved one with Down syndrome: Please reset your password to access your account, and we will notify you as the new features are launched.

If you are a RESEARCHER: You no longer need an account and your previous account information has been removed. Find out about the tools for researchers available to you.

Upcoming Events

Jul 24
NDSC_CONVENTION_LOGO_WITH_BACKGROUND
Dallas, Texas

Click hereexternal link for more information.

Jul 24
Crowd sitting at the GLOBAL Research and Medical Roundtable
Dallas, Texas

Click hereexternal link for more information.

Sep 6
NDSS NYC Buddy Walk attendees posing for a photo
New York City, New York

Click hereexternal link for more information.

Latest News

2025 NDSC Annual Convention logo
June 13, 2025
Join the DS-Connect team in Dallas, TX, from July 24–27 for the 2025 NDSC Annual Convention! The…
ABC-DS website homepage
May 22, 2025
The Alzheimer Biomarkers Consortium-Down Syndrome (ABC-DS) works to better understand Alzheimer’s…
Dr. Espinosa giving a thumbs up with two self-advocates and a woman
April 2, 2025
In March 2025, Linda Crnic Institute for Down Syndrome Executive Director and leader of DS-Connect…