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NIH-supported research survey to examine impact of COVID-19 on rare disease community.

For the millions of people living with a rare disease, COVID-19 presents challenges, from potential reduced access to needed medical care to possible heightened anxiety and stress. 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.

Results will help the rare disease 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.

The RDCRN, led by NIH's National Center for Advancing Translational Sciences (NCATS), in collaboration with nine other NIH institutes and centers, is made up of 20 recently funded clinical research consortia focused on better understanding how rare diseases progress and developing improved approaches for diagnosis and treatment. Scientists from different disciplines at hundreds of clinical sites around the world work together with about 140 patient advocacy groups to study more than 200 rare diseases, including immune system disorders; heart, lung, and kidney disorders; brain development diseases and more.

Though individually rare, affecting only a few hundred to several thousand people, rare diseases collectively affect an estimated 30 million people in the United States. Many rare diseases are life-threatening, and about half of those affected are children.

The research survey is one of the first efforts nationwide to quantify the impact of a health crisis on the rare disease community.

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Title Annotation:THE OBSERVATORY :: NEWS: TRENDS: ANALYSIS
Publication:Medical Laboratory Observer
Date:Jun 1, 2020
Words:246
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