Study on Vaccinations
SRNA completed the analysis of a study about experiences with vaccinations after a rare neuroimmune disorder diagnosis. The goal of the study was to understand and learn from our member community about their experiences with receiving vaccinations before and after a rare neuroimmune disorder diagnosis, with a focus on their experiences after diagnosis. The study involved participation in a survey administered using Surveymonkey and through postal mail. Respondents who reported that they experienced a repeat inflammatory attack within 30 days of receiving a vaccine were further requested to participate in an interviewer-administered questionnaire over the phone. Of those 600 who were randomly selected, 223 completed the survey. Thank you to all who participated in the study!
188 participants in this study (from 45 states) were diagnosed with TM (66.8%), NMOSD (13.9%), ADEM (3.6%), MOGAD (2.7%), AFM (2.2%), and recurrent TM (1.3%). We asked questions about vaccination history including 30 days prior to the onset of symptoms. 35 participants (15.7%) reported a vaccination within 30 days before their onset, 13 of whom received a subsequent vaccination, and none of them reported another attack within 30 days of a vaccination.
More than half (65.0%) of participants reported that they got one or more vaccinations after their disease onset. 6 respondents, or 4% of those who had received vaccinations after their onset, reported a subsequent inflammatory attack within 30 days of a vaccination, although some were unsure if new inflammation was found on imaging during this subsequent attack.
We also wanted to understand from our community their concerns about not receiving vaccinations. About half of those who did not receive any vaccinations after their onset noted that their healthcare provider advised them not to receive a vaccination because of their rare neuroimmune disorder, more than a third (37.3%) said they did not want to receive vaccinations because they were concerned there are problems with their immune system, and about a third (28%) reported that they did not want to receive vaccinations because they believed a vaccination caused their disorder.
We hope to submit these findings to an academic journal in 2021 and will inform our community about any publications that are accepted.
SRNA also continues to collect data for our patient Registry. The purpose of this registry is to help advance research about rare neuroimmune disorders, collaborate with researchers from around the world, and identify participants for clinical trials. In 2020, 58 people participated in the registry. Now with over 500 participants, SRNA will conduct an analysis of the data to better understand the diagnostic experiences of those with rare neuroimmune disorders. Below are some preliminary results.
As of March 2021, there were 531 participants in the registry. 73% of respondents were diagnosed with transverse myelitis, 9% with neuromyelitis optica spectrum disorder, 5% with acute disseminated encephalomyelitis, acute flaccid myelitis, and MOG antibody disease, and 3% with another disease or have yet to receive a diagnosis.
37% were diagnosed less than one week after symptom onset, but for 31% of respondents it took longer than six weeks to be diagnosed.
These results show 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. Time is critical in the early stages of a rare neuroimmune inflammatory attack, so quicker diagnoses are needed to start acute treatments and prevent damage to the central nervous system. Further, less than one-third of participants in the registry received a second acute treatment during their initial inflammatory attack. While more research is needed to determine the effectiveness of a second form of acute treatments, steroids, plasmapheresis (PLEX), IVIG, and cyclophosphamide have all been used during the onset of these disorders.
83% of participants received treatment after their first acute attack. However, of those who received a first acute treatment, only 30% of participants received a second treatment that was different than the first. 80% of participants received rehabilitative therapy.
80% of participants currently have weakness or paralysis, 81% of participants currently have numbness or loss of sensation, and 63% of participants have spasticity or uncontrolled muscle spasms. 53% experience neck or back pain, 77% of participants experience neuropathic pain, and 70% of participants have bladder and/or bowel symptoms. This shows that the majority of participants experienced 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.
In response to the COVID-19 pandemic, SRNA was interested in how the pandemic was impacting our community, which led us to launch our COVID-19 study. The goal of the study is to understand and learn from the SRNA member community about their experiences with COVID-19, experiences accessing care during the pandemic, and other potential social challenges (e.g., job loss, issues accessing medication or other supplies). Some of those with rare neuroimmune disorders are considered high risk for severe COVID-19 disease, are on medications that suppress the immune system, or have complex, ongoing medical needs. Understanding these issues for our community during this pandemic allows us to create relevant programming and inform the medical community about the effects of this pandemic on those with rare neuroimmune disorders. The study involves participation in an interviewer-guided survey administered over the phone using Surveymonkey. If you are interested in participating, please visit this page.