# Down Syndrome Connect Registry

> **NIH NIH OT2** · UNIVERSITY OF COLORADO DENVER · 2024 · $1,428,725

## Abstract

ABSTRACT.
The Down syndrome (DS)-Connect® registry is an important resource that enables collaboration between
the NIH, individuals with DS and their families, advocacy and professional organizations, and a
multidisciplinary community of professionals involved in medical care and scientific research serving people
with DS. Through collection of information on demographics, health histories, medications, and other self-
reported information from self-advocates and their families, DS-Connect® provides an unprecedented view
of this genetic condition that can elicit new research and clinical trials tailored to this population. Additionally,
self-advocates and their families enrolled in DS-Connect® are served in several ways, including access to
important information and resources, as well as opportunities for research participation. Furthermore, the
DS-Connect® datasets inform NIH and researchers to ensure that scientific research in this field is attuned
to the needs of the community.
Our team brings multidisciplinary expertise in development of patient registries and online research portals,
cohort studies of the population with DS, clinical trials in DS, open science approaches, and communication
and outreach campaigns in the DS community. We look forward to applying this expertise to transition the
DS-Connect® registry to a modernized, secure, and sustainable platform that can serve the diverse
stakeholders involved in this important resource.

## Key facts

- **NIH application ID:** 11040715
- **Project number:** 1OT2HD117033-01
- **Recipient organization:** UNIVERSITY OF COLORADO DENVER
- **Principal Investigator:** Joaquin M. Espinosa
- **Activity code:** OT2 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $1,428,725
- **Award type:** 1
- **Project period:** 2024-06-15 → 2026-06-14

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11040715

## Citation

> US National Institutes of Health, RePORTER application 11040715, Down Syndrome Connect Registry (1OT2HD117033-01). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/11040715. Licensed CC0.

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