Rare Diseases Clinical Research Network Opens Online Survey on COVID-19

Rare Diseases Clinical Research Network Opens Online Survey on COVID-19
The Rare Diseases Clinical Research Network (RDCRN) has opened an online survey to better understand how the COVID-19 outbreak is affecting people with rare diseases, their families, and caregivers. Survey questions cover a patient's physical and mental health, supply of treatments, and access to healthcare, among other disease-related issues and those brought by the pandemic. Developed and led by the RDCRN Data Management and Coordinating Center at Cincinnati Children’s Hospital Medical Center, the research survey is one of the first nationwide efforts to measure how this public health crisis is challenging the 30 million people in the U.S. estimated to have one of about 7,000 known rare diseases. The survey was prompted by discussions among scientists and patient advocacy groups about concerned voiced by patients, families, and caregivers regarding COVID-19. It aims for responses from at least 5,000 individuals with a rare disease or those caring for that person. Participation is open to anyone diagnosed with a rare disease, defined in the U.S. as a disorder affecting less than 1 in every 200,000 people, up through 89 years old. Only adults can complete the survey, which RDCRN anticipates takes about 20 minutes. “People affected by a rare disease, and families and caregivers,
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