How to Get Involved in AFM Research

If you or your child is suspected to have AFM, there are research studies you can participate in. Participating in these 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.

The research studies will 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 will make sure samples are safely and securely stored and available when scientists need them.

The AFM Biorepository

The NIH AFM Natural History Study

Collaborating organizations

The AFM Biorepository

CDC has a contract with the General Dynamics Information Technology/McKing Consulting Corporation to develop and manage the AFM Biorepository.

The NIH AFM Natural History Study

The CDC, the AFM Working Group, the NIH’s Division of Microbiology and Infectious Diseasesexternal icon, and the Collaborative Antiviral Study Group external icon

Who can participate?

The AFM Biorepository

  • Anyone ages 3 months or older (including adults) suspected to have AFM
  • At a hospital that is NOT participating in NIH AFM Natural History Study

The NIH AFM Natural History Study

  • 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?

The AFM Biorepository

  • At the hospital and then at the participant’s home using trained professionals to draw blood samples.

The NIH AFM Natural History Study

  • 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?

The AFM Biorepository

  • Samples, such as blood, stool, and nasal/throat swab, will be collected while the patient is hospitalized. This will include any extra samples of cerebrospinal fluid taken as part of the diagnostic process.
  • An additional blood sample will be taken 4 to 8 weeks after the patient’s onset of arm or leg weakness

The NIH AFM Natural History Study

  • 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?

The AFM Biorepository

  • An AFM Biorepository to collect and store anonymous samples of blood, stool, nasal/throat swabs, cerebrospinal fluid, and other clinical specimens.

The NIH AFM Natural History Study

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?

The AFM Biorepository

  • Better understand AFM’s etiology (causes of disease) and pathogenesis (manner of development of a disease)
  • Support future research studies in the development of diagnostics, treatments, and prevention methods

The NIH AFM Natural History Study

  • 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

The AFM Biorepository

1-855-874-6912

AFMProject@secure.mcking.com

The NIH AFM Natural History Study

Watch a video that describes the AFM Natural History Study.

Email: cpic@peds.uab.edu.

See more about this study and a list of study locations external icon

Page last reviewed: August 26, 2020