January 2010: Usher Researcher Call Notes

We hold an open conference call for researchers and families. The main topic of discussion for this particular meeting was Families and Treatments.

The good news is that a number of treatments for various aspects of Usher syndrome are nearing clinical trials. For these treatments to reach the masses someone is going to have to participate in the clinical trials. There are also treatments for Usher syndrome currently available, some that are widely discussed and supported to varying degrees (like Vitamin A and sunglasses) and others that offer hope to families but which are supported by less science. What should families be considering when they are approached to participate in a clinical trial? How do families know what science to trust? What should we be doing to ensure that families feel confident when participating but don't put themselves at undue risk?

Download the transcript here.