On June 9, 2021, the A-T Children’s Project sent the below email to A-T families about COVID-19 vaccines and antibody testing. The email asked families to fill out a brief survey if their family member with A-T had been vaccinated or been infected with COVID-19.

Dear A-T Parents,

We hope this email finds you and your family doing well! As the population continues to get vaccinated and activities start to open up, we understand that many of you would like to know what else you can do to stay safe.

One thing you can do is learn whether your family member with A-T has made antibodies in response to their COVID-19 vaccines. This information may help doctors determine what steps you should take in the coming months to ensure your family’s safety.

Of course, before you can learn if the vaccine has caused antibodies to be made, your A-T family member needs to receive the vaccine! If they haven’t received it yet, please know that Howard Lederman, MD, PhD – Director of the A-T Clinical Center at Johns Hopkins Children’s Center in Baltimore, Maryland – has advised us that all teenagers and adults with A-T should receive the vaccine with only a few exceptions (such as people in the midst of chemotherapy).

If your family member with A-T receives gamma globulin treatments, you should try to get them one of the mRNA vaccines (e.g., Pfizer or Moderna), as these vaccines have been particularly potent in stimulating immunity, even in people who are treated with gamma globulin because they have difficulty making antibodies.

The goal of this email note is to let you know that, once your family member with A-T has been fully vaccinated, an additional step should be taken to determine how effective it has been. Dr. Lederman recommends that an antibody blood test be performed four to six weeks after the final dose of vaccine has been received. If the antibody test shows that your family member with A-T made the antibody in response to the vaccine, resuming normal activities in the community is likely to be safer than if the test shows that they did not make antibody.

  • The correct antibody test to request is a quantitative spike protein test.
  • In the United States, the test code for obtaining this test from Quest Labs is 34499, and the test code for LabCorp is 164090.
  • The at-home finger-prick antibody tests are not helpful to determine the level of immunity post-vaccine resulting from the vaccine.
  • When you receive the results of the antibody test, please compete a brief vaccine survey on our website here: https://www.atcp.org/covid-19-surveys/. We promise to keep you posted as we get the results from across the A-T community.

We’d also like to hear from you if your child with A-T was previously infected by the COVID-19 virus. If they were, please complete a brief survey so that A-T doctors can learn more about its effects on people with A-T (the second survey at this link): https://www.atcp.org/covid-19-surveys/.

Please let me know if you have any questions and thank you in advance for your help with this important project.

All the best,


Jennifer Thornton, Executive Director

Related News

May 18 @ 1:49 am

Shining a Light on A-T at the IlluminATion Ball

The A-TCP is hosting IlluminATion: A BioPharma Leadership Ball on May 11 in Boston to shine a light

May 18 @ 1:49 am

NEAT Study – Phase 3 Clinical Trial of EryDex, a Low-Dose Steroid

Quince Therapeutics is advancing a phase 3 clinical trial to evaluate EryDex, a potential new treatment for ataxia-telangiectasia

May 18 @ 1:49 am

Measles Prevention in A-T: Recommendations from Dr. Lederman

Dr. Lederman of the A-T Clinical Center provides recommendations to keep people with A-T from catching measles.

May 18 @ 1:49 am

Looking Forward to Research Advances in 2024

As 2023 is wrapping up, we want to thank all of you who support the A-T Children’s Project