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

Wall, Dmitri, Alhusayen, Raed, Arents, Bernd, Apfelbacher, Christian, Balogh, Esther A., Bokhari, Laita, Bloem, Manja, Bosma, Angela L., Burton, Tim, Castelo-Soccio, Leslie, Fagan, Nicole, Feldman, Steven R., Fletcher, Godfrey, Flohr, Carsten, Freeman, Esther, French, Lars E., Griffiths, Christopher E.M., Hruza, George J., Ingram, John R., Kappelman, Michael D., Lara-Corrales, Irene, Lim, Henry W., Meah, Nekma, McMahon, Devon E., Mahil, Satveer K., McNicoll, Ian, Musters, Annelie, Naik, Haley B., Sinclair, Rodney, Smith, Catherine H., Spuls, Phyllis, Tobin, Desmond J., York, Katherine and Irvine, Alan D. 2021. Learning from disease registries during a pandemic: Moving toward an international federation of patient registries. Clinics in Dermatology 39 (3) , pp. 467-478. 10.1016/j.clindermatol.2021.01.018

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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 dermatology community to adopt a more cohesive approach to patient registry development and data sharing that can lead to myriad benefits. These include improved utilization of limited resources, increased data interoperability, improved ability to rapidly collect meaningful data, and shortened response times to generate real-world evidence. We call on the global dermatology community to support the development of an international federation of patient registries to consolidate and operationalize the lessons learned during this pandemic. This will provide an enduring means of applying this knowledge to the maintenance and development of sustainable, coherent, and impactful patient registries of benefit now and in the future.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Publisher: Elsevier
ISSN: 0738-081X
Date of First Compliant Deposit: 2 September 2021
Date of Acceptance: 4 September 2020
Last Modified: 19 May 2022 20:31
URI: https://orca.cardiff.ac.uk/id/eprint/143838

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