Down Syndrome-Connect Registry

Down Syndrome-Connect (DS-Connect®) is for people living with a diagnosis of Down Syndrome (DS), including people with mosaic DS and partial trisomy 21. All of the health data collected by DS-Connect® are related to the health issues of people with DS. By collecting information about people with DS, the Registry may be a catalyst for research that benefits people with DS.

A registry can:

• Help connect people with DS who may be interested in participating in research to scientists who study DS
• Speed up research in DS by collecting information that scientists can use
• Help scientists learn why people with DS have different symptoms
• Help healthcare providers improve how they treat people with DS
• Advance our understanding about how and why certain treatments work or don’t work by quickly publicizing the results of studies on DS
• Help scientists develop and test new treatments for people with DS Encourage new scientists to conduct research on DS

Registry coordinator: DSConnect@mail.nih.gov or sujata.bardhan@nih.gov 

Principal Investigator, Dr. Melissa A. Parisi: parisima@mail.nih.gov

The registry is open to a family member of a person with DS or an individual with DS irrespective of country of residence.

Details on how to participate in the registry can be found here on our website.

dsconnect.nih.gov