Study on clinical course of IPEX patients infected with SARS-CoV-2

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Call for international contributions relating to IPEX patients infected with SARS-CoV-2.

Dear ESID Member,

We at ESID Board want to pay your immediate attention to an ongoing international project to describe the clinical course of IPEX patients infected with SARS-CoV-2

We consider this an important and timely survey. If your center has such patients but you have not yet responded to the survey, and please consider, whether your center could participate in it.

Please find below further information and contact details.


Dear ESID Members,

We would like to invite you to collaborate on an international project to describe the clinical course of IPEX patients infected with SARS-CoV-2. Given that autoantibodies to type I IFNs underlie life-threatening COVID-19 pneumonia ( and that IPEX patients have increased frequencies of these autoantibodies (, it is important to define the course of SARS-CoV-2 infection in IPEX patients with and without autoantibodies to type I IFNs. A similar report was recently published for APS-1 patients (

If you follow IPEX patients and would like to contribute, we would ask you to submit for each patient the attached questionnaire, providing information about: 

            - ancestry, residency, age, gender, and FOXP3 genotype.
            - SARS-CoV-2 clinical course (and date of infection), if known
            - date(s) and type of COVID-19 vaccine received, if given
            - any other relevant immunological or virological information.

We would also need to receive, together with the questionnaire or at another date, plasma (preferable) or serum samples. Ideally longitudinal plasma samples of 250ul would be sent to measure both antibody responses and anti-cytokine auto-antibodies before and after COVID vaccination and/or disease.

If you would like to join this collaboration, please reply to both   and  . Please feel free to reach out to us with questions or suggestions, and please feel free to forward this email to others who would like to contribute to this project. We look forward to working with you on this exciting project, which will help us better understand the pathogenesis of COVID-19 and better care for patients with IPEX.

Best wishes,

Jake Rosenberg MD PhD
Division of Infectious Diseases
Massachusetts General Hospital

Jean-Laurent Casanova, MD, PhD 
Levy Family Professor, The Rockefeller University 
Investigator, Howard Hughes Medical Institute 
Head, St. Giles Laboratory of Human Genetics of Infectious Diseases 
Senior Attending Physician, Rockefeller University Hospital 
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