Launching the Usher Syndrome Data Collection Program

The Usher Syndrome Coalition community is partnering with RARE-X, a 501(c)(3) nonprofit, to build a Data Collection Program for Usher syndrome individuals and families. When you participate in the Usher Syndrome Data Collection Program, you’ll help accelerate research and the development of new drugs, devices, and other therapies. 

The Usher Syndrome Coalition community is building the Usher Syndrome Data Collection Program to:

  • Give individuals with Usher syndrome the opportunity to participate in clinical trials 
  • Inform researchers how Usher syndrome changes over time 
  • Enable better data to use in clinical trials 
  • Reduce the time it takes to study new medicines 
  • Speed up the time to get treatments to people with Usher syndrome 
  • Enable the use of data as a placebo (instead of actual patients) in a clinical trial 

The Usher Syndrome Data Collection Program will be participant-owned (meaning, you own your data) but enabled by RARE-X technology. All data governance, consent support, and data security will be put in place by RARE-X. Individuals and families with Usher syndrome will benefit from a streamlined process for collecting research-ready data in a phased approach. Since RARE-X is a nonprofit, there is no cost to you or the Usher syndrome community.

Our goal is to make the process as easy as possible for you. By clicking on the link below, you can learn more about this one-of-a-kind Data Collection Program and begin the first step in making your medical information available to researchers.

Frequently Asked Questions:

  • RARE-X is a 501(c)(3) nonprofit created by leaders in the fields of patient advocacy, medical research, biopharma, and technology. Click to learn more

  • Q: Will existing data be transferred from the Usher Syndrome Coalition’s USH Trust Registry to the Usher Syndrome Data Collection Program (DCP)?

    A: No. Information in the USH Trust will NOT be transferred to the Usher Syndrome DCP. The DCP is a new system, separate from the USH Trust. Anyone who wants to join the new DCP will be required to set up a new account with RARE-X at

  • Q: What will happen to the data stored by the Usher Syndrome Coalition?

    A: The Coalition will maintain and continue to grow the USH Trust. In fact, we are in the process of improving the USH Trust to help us get to know and serve the community better. This will allow us to continue to do what we do best:
    1) Identify the community.
    2) Build the community.
    3) Connect the Usher community with the research community. 
    4) Support the community via email, telephone, webinars, our USH Connections Conference, and the many resources on our website.

  • A: If you are interested in research, treatments, and/or a cure for Usher syndrome, the answer is Yes! Click to learn more.

  • Q: Why did the Usher Syndrome Coalition choose RARE-X?

    A: The Usher Syndrome Coalition chose RARE-X because:
    1) It uses structured and standardized Q&A
    2) Governance and security are handled by RARE-X
    3) There is no cost to patients, organizations, or researchers
    4) It offers the ability to analyze data across disease data (interesting for potential links between Usher syndrome and other diseases or disorders).
    5) It streamlines researcher access to data through its Federated Data Access Program