NOVEL: Patient Rare Disease Registry

This registry of rare visual diseases provides a mechanism of communication between Neuro-ophthalmologists who see rare and unusual diseases. This registry will coordinate research on these rare diseases. Neuro-ophthalmologists have agreed to be the “stewards” of clinical information (all HIPPA compliant) on conditions rare enough that no single institution can accumulate enough experience to understand either the natural history or the best treatment for a condition. By combining the efforts of our members at 120+ American medical schools, along with their international colleagues, we will collaboratively research these diseases and systematically investigate how to improve patient outcomes.

DISEASES

DiseaseStewards
Susac SyndromeRobert Egan, MD
Unusual Congenital Ocular Motility DisordersThomas M. Bosley, MD
Elizabeth C. Engle, MD