Research survey for rare disease patients and their families about impacts of COVID-19

Rare disease patients or their caregivers are invited to complete a 20-minute online survey from home about the ways the novel coronavirus pandemic is impacting people with rare diseases and their families.

Impacts can be related to physical health, emotional health, availability of supplies, access to care, or other problems. Your responses may help researchers understand the impacts of COVID-19 on the rare disease community.

The Rare Diseases Clinical Research Network (RDCRN) is conducting this study. The network is funded by the National Institutes of Health. It includes 23 research teams working to advance diagnosis and treatment of groups of rare diseases.

For Patient Advocacy Groups: FOD support working with the International Network for Fatty Acid Oxidation Disorders Research and Management (INFORM)

For Consortia: INFORM is one of the teams working with the RDCRN.

To complete the survey or learn more, visit the study page here. Questions? Email the study team at rd.covid19@cchmc.org.

WEBSITE ADDITION TEXT/LINKS 

Research survey for rare disease patients and their families about impacts of COVID-19

How is the novel coronavirus pandemic impacting people with rare diseases and their families? Complete the 20-minute research survey from home or learn more at this link.