Down Syndrome-Connect Registry

Information

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 LocationInternational - available to Australians
Registry ParticipationVoluntary
Registry Contact

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

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

Adding New Patients to Registry

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.

Please see the website for more information

dsconnect.nih.gov

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