NIH establishes Down syndrome patient registry - Mothering Forums

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#1 of 1 Old 10-26-2012, 08:04 PM - Thread Starter
 
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I thought this might be of interest to some of the MDC readership:

 

http://www.nih.gov/news/health/oct2012/nichd-26.htm

 

Excerpt:

 

 

Quote:

A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare

disorders.

 

People with Down syndrome or their family members will be able to enter contact information and health history in an online, secure, confidential database. Registry participants will be able to customize their profile, update it online, and choose which information they would like to display, including reminders about their own medical care and general information about Down syndrome. They also will be able to compare their own medical information to that of other registrants in a confidential and anonymous manner.

 

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