CHA News Article

Down Syndrome Registry to Connect Patients, Researchers, Clinicians

The National Institutes of Health (NIH) is establishing a new Down syndrome patient registry to facilitate contacts and information sharing among clinicians, researchers, families and patients. Individuals with Down syndrome or their family members will be able to enter contact information and health history confidentially in a secure online database. Clinicians and researchers authorized to access the database will be able to invite participants who consent to be contacted to participate in research studies. According to NIH, the registry will ultimately link to biorepositories of tissue samples and other resources, with the goal of making it easier for patients to take part in clinical studies for new medications and other treatment for Down syndrome. For more information, see the NIH press release on the registry at www.nichd.nih.gov/news/releases/102512-down-syndrome.cfm.

 

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