Preliminary Findings from The SRNA Registry
In 2017, SRNA created a patient registry to help advance research about rare neuroimmune disorders, collaborate with researchers from around the world, and identify participants for clinical trials. As of April of 2023, there have been nearly 700 participants who have completed the registry survey. The survey includes questions regarding onset, diagnosis, acute treatments, rehabilitation, ongoing symptoms, maintenance therapies, and more. We also send a follow-up survey to registry participants yearly. The information our community has shared continues to help us guide our programs and research, and we are grateful to all who have participated.
In April of this year, we reviewed the data from the registry to analyze trends and identify points for follow-up examination and research. Below are some of the preliminary findings.
As of April 2023, 68% of respondents were diagnosed with transverse myelitis, 10% with neuromyelitis optica spectrum disorder, 4% with acute disseminated encephalomyelitis, 4% acute flaccid myelitis, and 9% MOG antibody disease, and 4% with another disease or have yet to receive a diagnosis.
35% of participants in the registry were diagnosed less than one week after symptom onset, 22% were diagnosed within 1-3 weeks, and 9% were diagnosed within 4-6 weeks. 32% of participants received a diagnosis more than six weeks after symptom onset. These data indicate that the majority of patients did not receive a quick diagnosis (less than a week) after their onset of symptoms, which can delay the administration of acute treatments.
Regarding acute treatments, 83% of participants received treatment after their first acute attack. However, of those who received a first acute treatment, only 33% of participants received a second treatment that was different than the first. 76% of participants received rehabilitative therapy. Rehabilitation is important for restoring function following a rare neuroimmune diagnosis. Further advocacy is needed to ensure patients receive adequate rehabilitation following these disorders.
Most participants reported experiencing lasting symptoms following their diagnosis of a rare neuroimmune disorder, including weakness, paralysis, numbness, pain, spasticity, bladder dysfunction, and bowel dysfunction. While there are currently a variety of methods for treating these symptoms, more research is needed to improve the quality of life for these individuals and find stronger solutions for symptom management.
The SRNA registry is an ongoing study, and we are continuing to recruit participants from every stage after their or their loved one’s rare neuroimmune diagnosis. If you would like to receive registry flyers that can be given to patients at your clinic, please email Krissy Dilger at [email protected] to receive them.