Usher Syndrome Data Collection

If you have Usher 1F, help advance research with data collection.

Usher 1F Collaborative has partnered with the Usher Syndrome Coalition and the Usher Syndrome Society on an Usher syndrome registry through the RareX patient registry platform. 

When you participate in data collection, sometimes called a disease or patient registry, you’ll help accelerate research and the development of new treatments.

Data collection is a crucial step in treatment development.

To share your data, please visit the Data Collection portal.

For more information from the Usher Syndrome Coalition, please click here.

Getting to Know Your Genes

Usher syndrome type 1F is one of many recessive genetic diseases, that is those that hide through generations until two parents both carrying the mutation have a child, and both pass on the affected gene. With the tremendous advances in genetic testing over the past decade, couples can now get prescreened prior to having children. 

Estie Rose is a genetic counselor at JScreen. Usher 1F is one of over 200 recessive genetic diseases for which JScreen tests. Included in this list are over 100 diseases, including Usher 1F, that have mutations more prevalent in those of Ashkenazi Jewish descent. 

Watch Estie's informative talk to learn more about this important topic.