How to Get Involved in AFM Research

What to know

If you or your child is suspected to have AFM, there are research opportunities that you can participate in. Participation may not directly benefit you or your child, but the information gained will help with future research.

About AFM research

If you or your child is suspected to have AFM, there are research studies you can participate in. Participating in studies may not directly benefit you or your child, but the information gained will help with future research that can lead to the development of diagnostic tools, treatments, and preventive measures for AFM.

Research studies involve collecting samples from participants, which will be stored in biorepositories. A biorepository is a facility that collects and stores samples of biological materials for future research related to AFM. These biorepositories make sure samples are safely and securely stored and available when scientists need them.

The NIH AFM Natural History Study

Collaborating organizations

The CDC, the AFM Working Group, the NIH's Division of Microbiology and Infectious Diseases, and the Collaborative Antiviral Study Group

Who can participate?

  • Children less than 18 years old who developed arm or leg weakness (suspected to be AFM) within 30 days before enrolling into the study
  • People in the child's household who can be in a comparison group

Where will data and samples be collected?

At hospitals participating in the NIH AFM Natural History Study throughout the country, and others in Canada, Peru, and the United Kingdom. They will collect data, specimens, and images from the participants.

When will data and samples be collected?

  • Information will be collected over a 12-month period after the participant is enrolled in the study.
  • Data will be obtained while the patient is hospitalized and at multiple clinic visits after discharge.

What is being created?

Specific repositories to store and manage anonymous data from the participants, including for:

  • clinical specimens such as cerebrospinal fluid and blood
  • clinical data such as ongoing neurology exams and treatments received
  • diagnostic images such as MRIs

What can be learned?

  • Better characterize the epidemiology (pattern of disease in a group of people) and natural history of AFM (progression of the disease in an individual over time)
  • Identify factors that may put people at risk for developing AFM
  • Identify determinants of health outcomes for individuals with AFM
  • Describe diagnostic evaluations and treatments for AFM
  • Describe clinical characteristics (signs and symptoms) of AFM

More Information



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Content Source:
National Center for Immunization and Respiratory Diseases; Division of Viral Diseases