February 08, 2021
Photo courtesy of the CDC | Alissa Eckert, MS; Dan Higgins, MAMS

The Rare Diseases Clinical Research Network (RDCRN) will be collaborating with the NIH’s National Institute of Allergy and Infectious Diseases (NIAID) and the University of Pittsburgh on a SARS-CoV-2 Pandemic Serosurvey among people who live with rare diseases. 

The purpose of the serosurvey is to collect and analyze blood samples in order to understand how many people have been exposed to the novel coronavirus and have developed antibodies against it. NIAID has done a serosurvey in the general population of the United States, and it is important to do this also among people who live with rare diseases. The availability of a comparison group from the general population will improve the interpretation of the results.

In this new study, researchers at the University of Pittsburgh will be contacting respondents to the recent RDCRN online survey on the impacts of COVID-19 who agreed to further contact. Respondents will be invited to separately submit a blood sample using a simple home sampling kit.  This study would be optional for them and involve additional study questions. Participants will not receive individual COVID-19 test results.

Serosurvey test results will be available to RDCRN researchers to augment findings from the online survey.

The University of Pittsburgh recruiting team will begin reaching out to RDCRN survey respondents about the NIAID blood sample study early in 2021. 


For questions on the RDCRN research survey for rare disease patients and their families about impacts of COVID‑19, please email rd.covid19@cchmc.org. For questions on the NIAID serosurvey of people living with rare diseases, email RareDiseasesSerosurvey@pitt.edu.