The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research

• Published in: Orphanet journal of rare diseases Vol. 16; no. 1; p. 61
• Main Authors: Radtke, Heather B, Klein-Tasman, Bonita P, Merker, Vanessa L, Knight, Pamela, Ullrich, Nicole J, Jordan, Justin T, Korf, Bruce, Plotkin, Scott R
• Format: Journal Article
• Language: English
• Published: England BioMed Central Ltd 01.02.2021; BioMed Central; BMC
• Subjects: Care and treatment; Clinical care; Clinical trials; Coronaviruses; COVID-19; COVID-19 - epidemiology; Directors; Epidemics; FDA approval; Genetic counseling; Genetic disorders; Health facilities; Humans; Letter to the Editor; Medical research; Medicine, Experimental; Neurofibromatoses - epidemiology; Neurofibromatosis; Pandemics; Pandemics - statistics & numerical data; Patient Satisfaction; Patients; Pediatrics; Rare disease; Rare Diseases; Reimbursement; SARS-CoV-2 - pathogenicity; Surveys; Telehealth; Telemedicine; Telemedicine - methods; United States; United States; United States > US; COVID-19; Telehealth; Telemedicine; Neurofibromatosis; Rare disease; Clinical care; Research

The coronavirus disease 2019 (COVID-19) pandemic has had unprecedented impact on the provision of medical care for genetic disorders. The purpose of this study was to assess the effects of the pandemic on neurofibromatosis (NF) care and research. Sixty-three United States NF clinics were surveyed to...