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:
|
Registry Location | International - available to Australians |
Registry Participation | Voluntary |
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 |