Last week, NIH announced plans to create a national Down syndrome patient registry to facilitate care coordination and information sharing among families and researchers, EHR Intelligence reports.
NIH awarded PatientCrossroads a $300,000 contract to develop and operate the registry through September 2013. PatientCrossroads has developed patient registries for muscular dystrophy and certain rare disorders.
Details of Down Syndrome Patient Registry
People with Down syndrome and their families will be able to use the new registry to:
- Create a customized profile for the patient;
- Access the patient's health history;
- Input and update contact information;
- Select which patient data should be displayed;
- Receive reminders about the patient's medical care; and
- Compare the patient's medical information with anonymous data on other registry participants.
Goals of Project
If patients and families provide consent, clinicians and researchers will be able to use the registry to contact individuals who might be interested in participating in clinical studies (Murphy, EHR Intelligence, 10/29).
The registry eventually could link to repositories of tissue samples or other resources to make it easier for researchers to study possible new treatments for Down syndrome (NIH release, 10/26).