NIH-Backed Survey Investigates the Impact of COVID-19 on the Rare Disease Community

According to a recent press release published by the National Institutes of Health (NIH), a new survey spearheaded by the Rare Diseases Clinical Research Network (RDCRN) is seeking to understand how the ongoing coronavirus/COVID-19 pandemic has impacted rare disease patients, caregivers, and families. While it is understood that the crisis has already caused challenges for the rare community, the findings from this survey aim to more fully understand the impacts so that effective steps can be taken to improve the situation.

About The RDCRN

The RDCRN is managed by the National Center for Advancing Translational Sciences (NCATS) and works together alongside nine additional NIH backed Centers and Institutes. The Network is comprised of 20 different clinical research consortia that focus on studying rare diseases. So far the RDCRN has worked together with at least 140 different patient groups and has been involved in research related to over 200 different rare diseases, conditions, and disorders.

With these factors in mind, the RDCRN is especially positioned to conduct an effective survey on this subject matter. Dr. Anne Pariser, Director of the NCATS Office of Rare Diseases Research, had this to say:

 “The network has the necessary infrastructure, disease expertise, and access to patients through patient organizations to find answers to important questions.”

The survey, which will be distributed online, aims to gather responses from at least 5,000 participants. It represents one of the first official efforts to measure the impacts of the pandemic on the rare disease patient community. It is already clear that COVID-19 has caused disruptions that can affect patients’ access to medications, clinical studies, and their specialists, and some patients are also at an increased risk of complications if they are infected.

Gathering Rare Disease Data, Crafting a Response

The RDCRN is in a position in which it can be equipped to respond to the crisis with important advice and information; however, the needs of rare patients are not necessarily going to be monolithic. Some patients may need to follow different advice than others depending on the nature of their disease or condition. Only with the data gathered from this survey can the organization prepare guidelines that are useful for a wide variety of rare patients.

Are you a rare patient, caregiver, or family member? Take the survey here.


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