Q: If I’m in the USH Trust, should I join the new Usher Syndrome Data Collection Program (DCP) hosted by RARE-X?
First, be assured that RARE-X will not share your name, address, or other “identifying information” with researchers. That will remain confidential.
Second, until now, there was no central place for the Usher community - and all people with rare diseases like Usher worldwide - to share their genetic and health information with researchers. By joining the DCP and answering a series of surveys, you will be helping to build knowledge in a secure, centralized place. Researchers studying hearing loss, vision loss, balance issues, or any other health issues you’ve shared, will be able to identify trends in data and determine if there might be enough people to support a survey or clinical trial.
The RARE-X platform leverages existing technology powered by the Broad Institute of MIT and Harvard that follows all government regulations for privacy and security worldwide.
RARE-X provides this service FREE to individuals with rare diseases, advocacy organizations like the Coalition, and researchers.