This Workshop is designed to bring together affected individuals and their families, in addition to leading experts from academia and industry, in order to discuss openly, and in detail, what is known about PRPH2 disease pathology, disease models, clinical characteristics, and therapeutic approaches. The agenda will also include a roundtable on emerging therapies with representatives from industry.
Importantly, we will also hear from affected individuals and their families in order to ensure their perspectives for care, treatment and therapies inform both research and clinical studies. While this workshop will focus on PRPH2-associated retinal disease, the topics discussed will also have applicability to other autosomal dominantly inherited retinal degenerations.
Members of the My Retina Tracker Registry (MRTR) who have indicated that they have had genetic testing that identified a variant in the PRPH2 gene will be sent a link to an online survey regarding their personal journey, as well as expectations and perspectives on emerging possible treatments and therapies. These results will inform the clinicians and researchers attending this workshop. This is an important opportunity for Registry members to participate in the research and is vital to the success of this discussion. We also welcome participation from individuals not currently in the MRTR, with the hope of galvanizing and learning from the entire PRPH2 community.