Archive forSeptember, 2008

Rare Disease Registry

NOVEL has established a gateway for a Rare Disease Registry. Find the page at:

http://library.med.utah.edu/NOVEL/rare

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 agree 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.

The rare diseases selected at this time are:
Autoimmune Mediated Optic Neuropathy
Chiari mimicking P. Cerebri
Genetic eye movement disorder
Posterior cortical atrophy
Sarcoid optic neuropathy
Susac’s Disease

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