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Clinics in dermatology · 2021

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

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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

Аннотация

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.

Предметные рубрики MeSH

ИП Урсолов Владлен Сергеевич

ИНН 500118482352 · ОГРНИП 314500117700049

Реквизиты и контакты