For the estimated 25 million people in the United States living with a rare disease, the novel coronavirus disease COVID-19 has presented many challenges. In response, the National Institutes of Health-supported Rare Diseases Clinical Research Network (RDCRN) conducted a series of online surveys to find out how the COVID-19 pandemic has impacted the rare diseases community. Now, the RDCRN is launching a survey for participants in the NIH COVID-19 antibody study (COVIDSRCH) to compare with the survey completed by individuals with rare diseases.
“We are looking for volunteers to help us gather knowledge on effects of the pandemic to compare with previously completed surveys done by the rare diseases community,” says Maurizio Macaluso, MD, DrPH, FACE, co-principal investigator with the RDCRN’s Data Management and Coordinating Center. “We want to help identify common issues with mental health support, access to treatment, vaccine availability and concerns, physical health, availability of supplies, or other problems.”
Results of the surveys will help the rare diseases research community shed light on the needs of people with rare diseases during the COVID-19 pandemic and other potential health crises, in addition to informing future research efforts.
This new survey COVIDSRCH participants extends a partnership the RDCRN forged in 2021 with the NIH. Now, the NIH will send a request to a group of 5,000 healthy participants identified from its initial serosurvey of the general population, inviting them to complete the RDCRN’s online survey.
Last year, respondents to the initial RDCRN COVID-19 impacts survey were also invited to participate in the NIH COVID-19 antibody study (COVIDSRCH). “By analyzing the results of the RDCRN impacts survey and the NIH serosurvey across both the rare disease community and COVIDSRCH participants, we are building a robust data set that will allow us to compare experiences with the pandemic across populations and over time,” says Macaluso.