On January 23, 2017 SRNA cosponsored a collaborative meeting on acute flaccid myelitis (AFM) that was hosted by the CONQUER Program of UT Southwestern and Children’s Health Dallas. Twenty-four health care providers, researchers, Centers for Disease Control (CDC) representatives, and SRNA participated in this meeting. The purpose of the meeting was to bring stakeholders together to compare data and experiences about AFM, learn about the initiatives led by different stakeholders, review the current case definition and identify research needs and potential collaborations.
Here are the top ten takeaways from the AFM meeting:
- Dr. Benjamin Greenberg of UT Southwestern started the meeting by giving a background about AFM, including the history of the disorder. He emphasized that AFM has likely been around for many years, but that we are only now aware of it and are describing it as AFM.
- There remains some ambiguity on the case definition of AFM that gets reported to the CDC, but researchers and medical professionals are working hard to come to a consensus about this. Dr. Sarah Hopkins from the Children’s Hospital of Philadelphia shared her experience as a case reviewer for the CDC and at CHOP, and that imaging interpretation continues to be difficult with regard to involvement of gray matter and the timing of the MRI.
- Dr. Manisha Patel from the CDC discussed the number of AFM cases that have been reported to the CDC. There were fewer cases reported in 2015 than 2014.
- Dr. Thomas Briese from Columbia University Medical Center discussed the role of enterovirus D68, a virus that is capable of causing an infection in the central nervous system. Enterovirus D68 may be a factor in recent clusters of AFM.
- Dr. Carol Glaser from Kaiser Permanente and Dr. Avi Nath from the National Institutes of Health shared their views on whether or not enterovirus D68 could be a cause of AFM, and came to the conclusion that there was significant data linking EVD68 to AFM, but more research would be useful.
- Dr. Ken Tyler and his team from the University of Colorado have developed an animal model of AFM that will hopefully help researchers better understand the mechanisms behind AFM.
- Dr. Teri Schreiner from the University of Colorado reported findings from a study on outcomes after pediatric AFM. She found that all the children they followed improved functionally but continue to have limb weakness.
- Dr. Greenberg reviewed the CAPTURE study which is an ongoing study in pediatric transverse myelitis, including AFM, which will hopefully help us better understand this disorder.
- While the CDC does not currently recommend IV steroids, IVIG, or plasma exchange (PLEX) in the treatment of AFM, some physicians treating patients with AFM have seen improvement in their patients with these treatments. Currently, there are no data or consensus to systematically guide treatment in AFM. Treatment decisions should be individualized and based on the clinical characteristics of each patient.
- Determining the proper diagnostic tests and the correct timing for these tests is critical to improving the care and treatment of people with AFM.
Overall, the meeting was an excellent opportunity to learn about what is currently being done to better understand AFM, to improve the case definition, and improve diagnosis and treatment options. It was a great step in building collaborative approaches to addressing this growing public health concern. We look forward to sharing more updates with the community as we learn more.