Data Collection

Since AFM is a relatively new condition, we need information on all patients to help us better understand the spectrum of AFM illness, all possible causes, risk factors, and outcomes for this condition.

Quick Resources

Clinicians
Send all information about patients who meet the clinical and laboratory/imaging criteria for AFM (sudden onset of flaccid limb weakness and an MRI with at least some gray matter lesions in the spinal cord), regardless of laboratory results, to your state or local health department as soon as possible.

Health Departments
Send the patient summary form and additional case information for each patient to CDC regardless of any laboratory results. Health departments can contact CDC at AFMinfo@cdc.gov for further information on sending forms.

How to send information about a patient under investigation (PUI) for AFM

Clinicians

Identify PUI for AFM: patient with onset of acute flaccid limb weakness (clinical criterion) AND an MRI with at least some gray matter lesions in the spinal cord (laboratory/imaging criterion).

Please send information about this patient to the health department regardless of any laboratory results.

STEP
02
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Clinicians

Collect specimens

  • Collect specimens as close to onset of limb weakness as possible and handle and store as directed.
  • Work with your health department to coordinate submission of specimens for testing at CDC.
    • Specimens should be shipped overnight to arrive at CDC Tuesday through Friday.
    • Specimen submission form (DASH pdf icon[1 page]) should be completed for each specimen submitted.

Specimen container types

Clinicians

Contact health department

  • Contact your state or local health department when you identify a PUI for AFM. See State and Local AFM Contacts for Clinicians for a complete list of health department contact information. If your health department’s information is not on the list, call the CDC Emergency Operations Center at 770‑488‑7100.
  • Coordinate with your health department to send information about PUIs and ship specimens to CDC.
Clinicians

Compile clinical information

The health department will request additional information contained in medical records. Send copies of the following to your health department for sharing with CDC in order to assist with case classification:

  • MRI report
  • MRI images
Health Departments

Send information to CDC

Health departments should complete the AFM patient summary form and send the MRI report and images to CDC.

  • Send information for each patient under investigation (PUI) for AFM to CDC using a secure CDC file transfer site or REDCap.
  • Health departments should also send information about every death of an AFM case to CDC.
  • Contact CDC by email at AFMinfo@cdc.gov for further information on sending forms.
Health Departments

Relay case classification to patient’s clinician

Patients will be classified by national AFM experts according to the Council of State and Territorial Epidemiologists (CSTE) AFM case definitionexternal icon.  After expert review, patient classification is given back to the health department and should be relayed to the clinician by the health department.

Health Departments

Conduct long-term follow-up of confirmed and probable cases of AFM

Patients with confirmed or probable AFM will be contacted by the health department at 2 (60 days), 6, and 12 months after the onset of limb weakness to collect information on outcomes after their AFM illness.

  • At the time of the 2 month follow-up, the health department will also collect complete medical records to send to CDC so that we can learn more about this illness. The information to collect includes:
    • admission and discharge notes
    • neurology and infectious disease consult notes
    • MRI report
    • vaccination registry data
    • laboratory test results
    • discharge summary
  • Send complete medical information for each confirmed and probable case of AFM to CDC using a secure CDC file transfer site or REDCap.
Contact CDC with Questions
  • For health department contact information: Call the CDC Emergency Operations Center at 770‑488‑7100
  • For non-urgent questions: Email AFMinfo@cdc.gov

Related Links