NOVEL: Patient Rare Disease Registry

DISEASES

Autoimmune Mediated Optic Neuropathy

Steward:

Larry Frohman, MD
Professor of Ophthalmology & Neurosciences
New Jersey Medical School, Ophthalmology
frohman AT umdnj.edu
Fax: 973-972-2068

IRB Exemption
Data Collection Form

CLINICAL CRITERIA (all must be met):

  1. Multiple attacks in one eye or attacks in both eyes with at least three total attacks (both eyes simultaneously counts as two attacks, attacks must be separated in time by six weeks to count as an attack, and recurrence on a steroid taper after 4 weeks of steroid treatment may count as a new attack)
  2. Either serological abnormalities or skin biopsy changes consistent with AIMON
    1. ANA, Rheumatoid factor, Lupus anticoagulant, or Anticardiolipin antibodies) OR
    2. Skin biopsy of non-lesional/non-sun exposed skin consistent with vasculitis/collagen vascular disease, or with immunoreactant deposition on immunofluorescence
  3. No diagnosis of a defined collagen vascular disease throughout the period of time the patient was followed.
  4. At least twelve months of neuro-ophthalmic follow-up

Instructions for submitting cases:

  1. Contact your IRB to see if you are exempt or must submit—if you need to submit, feel free to use enclosed sample IRB.
  2. Click on the Data Collection Form link above and save (download) the data collection word document
  3. Fill this out as completely as possible
  4. Find the email or fax number of the Steward for this disease
  5. Email or fax the form to the steward