afm: putting the pieces together from admission to discharge · afm patient may or may not be...
TRANSCRIPT
Benjamin Greenberg, M.D., M.H.S.Director, Transverse Myelitis and NMO Program
Department of Neurology and NeurotherapeuticsDepartment of Pediatrics
University of Texas Southwestern Medical Center
AFM: Putting the pieces together from admission to discharge
Disclosures
• Dr. Greenberg has received consulting fees from Alexion, EMD Serono, Novartis, Viela Bio, Roche, Greenwich Bio, Axon Advisors, Rubin Anders and Abcam. Dr. Greenberg has received grant support from NIH, NMSS, PCORI, TMA, Guthy Jackson Charitable Foundation, and Clene Nanomedicine• Dr. Greenberg is an unpaid member of the Siegel Rare Neuroimmune
Association
The symposium thus far and upcoming…..• AFM the disease• Epidemiology of AFM• Parents perspective• The virus• Differential diagnosis• Imaging• Electrophysiology• Natural history• ICU management• Respiratory issues• Rehabilitation
Putting the pieces together…..Who? What? How? Why? When?
Virus circulates
Some people
become infected
Some people have
respiratory symptoms
Some people develop
AFM
Patient may or
may not be
diagnosed
Variable symptom locations
and severity
Variable short term outcomes
Variable long term outcomes
The Current State of Needs
AFM Populations
Future Patients
Rapid Diagnosis
Acute Treatment Protocols
Prevention
Current Patients
Rehabilitation Approaches
Augmented Recovery
Psychosocial Support
The Current State of Needs
AFM Populations
Future Patients
Rapid Diagnosis
Acute Treatment Protocols
Prevention
Current Patients
Rehabilitation Approaches
Augmented Recovery
Psychosocial Support
Strategies for future patients
Diagnostics
Awareness Education Resources/Tools
Viral Diagnostics Neurodiagnostics
Therapeutics
Acute Treatment Outcomes Database
Pathobiology
Antivirals Antiinflammatory Agents
Prevention
Virology and immunology
Studies
Infection Prevention
Vaccine Development
The Current State of Needs
AFM Populations
Future Patients
Rapid Diagnosis
Acute Treatment Protocols
Prevention
Current Patients
Rehabilitation Approaches
Augmented Recovery
Psychosocial Support
Strategies for current patients
Rehabilitation
TimecourseOutcomes relative
to intervention intensity
Outcomes relative to intervention
type
E-stim and FES Exercises/Aqua therapy
Augmented Recovery
Stem cell development Nerve transfers
Targets Timing
Psychosocial Support
Patient Family Community/School
Deciding Priorities
• Future patients• Immediate - recognition and acute therapy protocols• Long term – vaccine development
• Existing patients• Immediate – Rehabilitation approaches, nerve-transfer data collection• Long term – stem cell development
How do we get it done?
Stakeholders
Patients
Clinicians
Public Health
Basic Scientists
What Promotes Success
• Advocacy from patients/families targeting….• Patients (even those who recovered)• Clinicians• Government officials
• Resources for organized efforts• Look for opportunities to partner (the value of SRNA)
• Sacrifice and dedication (time, data on top of an already full plate)
Putting the pieces together…..Who? What? How? Why? When?
Virus circulates
Some people
become infected
Some people have
respiratory symptoms
Some people develop
AFM
Patient may or
may not be
diagnosed
Variable symptom locations
and severity
Variable short term outcomes
Variable long term outcomes
There is a lot of work to be done, but we are stronger together
