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

ABSTRACT:

Purpose

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.

Methods

Sixty-three United States NF clinics were surveyed to identify the impact of the pandemic on clinician role, patient volume, continuity of guideline-driven surveillance, research protocols, and use of (and satisfaction with) telehealth for the delivery of NF care.

Results

Fifty-two clinic directors or their representatives completed the survey (83% response rate). About 2/3 of the clinics reported a greater than 50% decrease in the number of available patient appointments, and modified clinical surveillance an

SUBMITTER: Radtke HB 

PROVIDER: S-EPMC7848872 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature