Learning from disease registries during a pandemic: Moving toward an international federation of patient registries.

ABSTRACT: High-quality dermatology patient registries often require considerable time to develop and produce meaningful data. Development time is influenced by registry complexity and regulatory hurdles that vary significantly nationally and institutionally. The rapid emergence of the coronavirus disease 2019 (COVID-19) global pandemic has challenged health services in an unprecedented manner. Mobilization of the dermatology community in response has included rapid development and deployment of multiple, partially harmonized, international patient registries, reinventing established patient registry timelines. Partnership with patient organizations has demonstrated the critical nature of inclusive patient involvement. This global effort has demonstrated the value, capacity, and necessity for the der

SUBMITTER: Wall D 

PROVIDER: S-EPMC8432911 | biostudies-literature | 2021 May-Jun

REPOSITORIES: biostudies-literature