December 06, 2021
COVID Patient Survey 2021 Follow-Up image

The Rare Diseases Clinical Research Network (RDCRN) invites those who participated in the 2020 survey “Impacts of COVID-19 on the Rare Disease Community” to complete an online follow-up survey about the ways COVID-19 has impacted people with rare diseases and their families since the beginning of the pandemic.

Impacts discussed will include physical health, emotional health, availability of supplies, access to care, vaccination concerns and side effects, ongoing COVID symptoms, or other problems. Responses may help researchers understand the effects of COVID-19 on the rare disease community.

The Rare Diseases Clinical Research Network is funded by the National Institutes of Health. It includes 20 research teams working to advance diagnosis and treatment of groups of rare diseases.

Preliminary results from the initial Impact of COVID-19 Survey can be found here.

The follow-up survey is open only to those who responded to the initial survey. For more information, visit the study page here. Questions? Email the study team at rd.covid19@cchmc.org.


The Rare Diseases Clinical Research Network (RDCRN) is funded by the National Institutes of Health (NIH) and led by the National Center for Advancing Translational Sciences (NCATS) through its Office of Rare Diseases Research (ORDR). Now in its fourth five-year funding cycle, RDCRN is a partnership with funding and programmatic support provided by Institutes, Centers, and Offices across NIH, including the National Institute of Neurological Disorders and Stroke, the National Institute of Allergy and Infectious Diseases, the National Institute of Diabetes and Digestive and Kidney Diseases, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Heart, Lung, and Blood Institute, the National Institute of Dental and Craniofacial Research, the National Institute of Mental Health, and the Office of Dietary Supplements.