Dedicated to Improving the Lives of Blind and Visually Impaired People

New Data Collection Program Launched for the Usher Syndrome Community

by Daniel Parker, RDPFS Intern

The Usher Syndrome Coalition (USC) has announced a new data collection platform (DCP) for those living with the condition. The leading cause of genetic combined blindness and deafness, Usher Syndrome is a rare inherited condition. The new program, a collaboration with nonprofit organization RARE-X, a global data sharing platform for rare disease, will help to accelerate research into new and improved drugs, therapies, and devices through voluntary participation. RARE-X takes on hosting, governance, and security duties for the DPC at no cost to the user. Goals of the new platform include:

giving those with Usher Syndrome the ability to join clinical trials;

providing better data for use in clinical trials, as well as enabling the use of data, rather than patients, as a placebo;

giving researchers an idea of how Usher Syndrome changes over time; and

expediting the process for studying new medicines and for getting treatments to people who need them.

DCP’s work complements that of the Ush Trust, which connects the USC and researchers with people and families in the Usher community. The two serve different purposes: the Ush Trust is a simple registry program for the USC, whereas the DPC connects the community with research efforts, clinical trials and treatments. A webinar detailing the usage and benefits of this new program was held on November 16, 2022, and the recording will be made available on the USC’s website. Here is the link to join the new Data Collection Platform.