DS-Connect: Down Syndrome Registry

A National Information Clearinghouse

Launched by the National Institutes of Health in September 2013, DS-Connect: The Down Syndrome Registry is a secure information clearinghouse facilitating communication among families, researchers, clinicians, and patient groups in support of clinical trials and studies to benefit people with DS.

Developed through collaboration with the Down Syndrome Consortium and initially funded by NIH, DS-Connect offers a centralized venue for information-sharing, giving the community new ways to learn more about Down syndrome, make connections with clinicians and scientists, and access information about opportunities to participate in research.

We encourage families to become part of DS-Connect. The more people registered, the more valid and valuable the information becomes: with a larger body of aggregate data to draw from, clinicians and researchers can advance more opportunities for participation in research, and the community can develop a broader, more accurate picture of the real-world outcomes for families living with Ds.

All data collected will be “de-identified” to protect the privacy of participants; your family’s personal information will be carefully safeguarded.

To learn more about the registry, download DS-Connect’s informational flyer. Whether your loved one is a child or an adult with Ds, please consider registering — this is a resource that will serve and benefit us all.

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