NIH Survey to Examine Impact of COVID-19 on Rare Disease Community

The results will help the rare disease 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.

An online survey launched by the National Institutes of Health (NIH)-supported Rare Diseases Clinical Research Network (RDCRN) is intended to measure how the coronavirus disease 2019 (COVID-19) pandemic is affecting individuals with rare diseases, their families, and their caregivers, according to a press release.

The results will help the rare disease 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.

The RDCRN is comprised of 20 recently funded clinical research consortia focused on establishing a better understanding how rare diseases progress and developing improved approaches for diagnosis and treatment.

According to an NIH press release, rare diseases collectively affect an estimated 30 million people in the United States, and many rare diseases are life-threatening, with children representing approximately half of those affected.

The research survey is among the first efforts across the nation to quantify the impact of a health crisis on the rare disease community. Distributed online, the survey is seeking responses from approximately 5000 people with a rare disease or caring for someone who has a rare disease. In addition, a few RDCRN-funded scientists plan to incorporate survey results into natural history studies, which follow patients to chart the progression and a disease.

Anyone with a rare disease can take the survey and it is not limited to the diseases studied within the RDCRN, according to the press release.

“People affected by a rare disease, and families and caregivers, initially asked how to avoid the virus,” said RDCRN program director Tiina Urv, PhD, in the NIH press release. “Then they became concerned about access to medicines and maintaining medical care during the pandemic, and the status of clinical trials. They were concerned about meeting the medical challenges that they face every day. We were hearing enough anecdotally that we wanted to get a clearer picture of the problem.”

The survey questions 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. Further, the survey asks what the participants’ concerns are as a person with a rare disease, or as family members and caregivers.

The researchers hope the survey data may help them answer other questions they have in the rare disease realm, such as whether some subgroups of people with rare diseases fare better or worse with the COVID-19 virus.

REFERENCE

NIH-supported research survey to examine impact of COVID-19 on rare diseases community. NIH. https://www.nih.gov/news-events/news-releases/nih-supported-research-survey-examine-impact-covid-19-rare-diseases-community. Published May 7, 2020. Accessed May 15, 2020.