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

Dmitri Wall*, Raed Alhusayen, Bernd Arents, Christian Apfelbacher, Esther A. Balogh, Laita Bokhari, Manja Bloem, Angela L. Bosma, Tim Burton, Leslie Castelo-Soccio, Nicole Fagan, Steven R. Feldman, Godfrey Fletcher, Carsten Flohr, Esther Freeman, Lars E. French, Christopher E.M. Griffiths, George J. Hruza, John R. Ingram, Michael D. KappelmanIrene Lara-Corrales, Henry W. Lim, Nekma Meah, Devon E. McMahon, Satveer K. Mahil, Ian McNicoll, Annelie Musters, Haley B. Naik, Rodney Sinclair, Catherine H. Smith, Phyllis Spuls, Desmond J. Tobin, Katherine York, Alan D. Irvine

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

7 Citations (Scopus)

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.

Original languageEnglish
Pages (from-to)467-478
Number of pages12
JournalClinics in Dermatology
Volume39
Issue number3
DOIs
Publication statusPublished - 1 May 2021

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