Research Horizons


How Has COVID-19 Affected Families of Children with Rare Diseases?

NIH-supported research survey to examine pandemic’s impact on rare diseases community

A new online survey launched by the National Institutes of Health-supported Rare Diseases Clinical Research Network (RDCRN) aims to find out how the COVID-19 pandemic is impacting individuals with rare diseases, their families and their caregivers.

Questions in the research survey focus on a range of topics, from a patient’s ability to get proper care for a rare disease or condition to mental and emotional health. The survey asks what their concerns are as a person with a rare disease, or as family members and caregivers. Groups of people with different rare diseases and the community will have different needs and concerns, whether it is how to get needed medications or physical therapy to navigating an emergency room in a medical crisis.

“We hope the study questionnaire will help us better estimate the proportion of rare disease patients who have been diagnosed with COVID-19, and find out how they are affected whether or not they had COVID-19,” said project principal investigator Maurizio Macaluso, MD, DrPH, at Cincinnati Children’s. “This survey provides an opportunity for the rare disease community to get timely data on the challenges they face.”

Read the network’s announcement

Click here for more information on the RDCRN COVID-19 survey, including how to participate.