SRNA Registry: How to Request Data

Since 2017, SRNA has been collecting data from individuals diagnosed with a rare neuroimmune disorder, and their caregivers, through the patient-reported SRNA Registry. The purpose of the Registry is to help advance research about rare neuroimmune disorders, collaborate with researchers from around the world, and identify participants for clinical trials.

The Registry collects information about diagnosis, symptoms at onset, diagnostic tests used, acute treatments received, rehabilitation, and current symptoms. Participants are also asked whether they are willing to be contacted about clinical studies and trials.

To date, SRNA has collected data from over 700 participants. If you are interested in requesting de-identified information or recruiting for a potential research study using the SRNA Registry, please contact GG deFiebre at [email protected].

Inclusion Criteria:

  • Individuals must be diagnosed with acute disseminated encephalomyelitis (ADEM), acute flaccid myelitis (AFM), MOG antibody disease (MOGAD), neuromyelitis optica spectrum disorder (NMOSD), optic neuritis (ON), transverse myelitis (TM), or another related disorder (multiple sclerosis, spinal stroke, HTLV I and II, anti-NMDA receptor encephalitis etc.).
  • Consent to participate must be provided by an eligible adult participant or a legal guardian if the participant is under the age of 18.

You may also request copies of our SRNA Registry flyer for your clinic by filling out this form.