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Resources and Links

Research Information

  • Basic facts and resources for patients and families.

  • The National Institutes of Health (NIH) maintains a registry of publicly and privately supported clinical studies of human participants conducted around the world. Scientific progress rests on making sure individuals with Usher Syndrome and their doctors are fully aware and participate in research opportunities. On the website, type “usher syndrome” in the search field to retrieve a list of ongoing trials on this disorder.

  • This is a clinical research protocol of the National Eye Institute, part of the National Institutes of Health, consisting of a network of vision research and clinical labs from the U.S. and Canada, a bank of blood and DNA samples, a secure online database containing genetic and clinical participant information tied to a patient registry. eyeGene gives patients, and in some cases their family members, an opportunity to get diagnostic genetic testing for their eye diseases, including Usher syndrome, and a chance to be contacted for future studies. To participate, a patient’s doctor must register with eyeGENE and provide clinical information about the eye condition. Patients must consent to participate in the study, which means agreeing to have DNA/blood stored and later used for eye research by approved researchers in the vision community. The program will cover the costs of the DNA analysis, however, the costs of the eye exam, blood draw and shipping costs, as well as genetic counseling are not covered.

  • Research training opportunities are available through National Institutes of Health (NIH) grant funding or at the NIH. Scientists at universities, institutions, and medical centers around the U.S. may apply to NIH for extramural training grant support. In addition, scientists may conduct training at NIH’s intramural research programs at the Maryland campus. NIH supports extramural research and conducts intramural research on Usher syndrome in addition to research related to the normal and disordered processes of vision and hearing.

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