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

• Published in: Clinics in dermatology Vol. 39; no. 3; pp. 467 - 478
• Main Authors: 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, Irvine, Alan D.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.05.2021; Published by Elsevier Inc
• Subjects: COVID-19; Graduate Medical Education Rounds; Humans; Pandemics; Registries; SARS-CoV-2
• ISSN: 0738-081X; 1879-1131
• DOI: 10.1016/j.clindermatol.2021.01.018

•Patient registries are key means of collecting real-world evidence, particularly during pandemics.•Successful patient registries require a high level of physician and patient engagement with broad participation to be successful.•More stringent data security, privacy, and governance requirements are increasing barriers to patient registry development.•Lessons learned from contrasting existing patient registries with those developed during the COVID-19 global pandemic are vital to the development and maintenance of patient registries that will better serve the dermatology community during and outside of future pandemics.•This contribution calls on the dermatology community to commit to collaborative development, participation, and maintenance of interoperable patient registries through the development of an international federation of patient registries. It also recognizes the rise of patient facing registries, and why patient involvement at all levels of registry design, deployment and data analysis is crucial. 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.