October 2010: Usher Researcher Call Notes
With some treatments nearing clinical trial, it is becoming more and more important that we be able to locate and identify potential candidates. A voluntary Usher syndrome registry might be the right tool for the job. It might also be used to provide insight on the nature of Usher syndrome through questionnaires sent to willing participants. Questions such as 'would you have wanted to learn you had Usher syndrome at a young age?' could be answered to a degree using such a tool. But there are lot of questions around the creation of such a registry, particularly around the oversight, security, and value of the data as well as ethical questions about the impact on and protection of families.
One example of such a registry is the Interactive Autism Network (IAN).