Learning from disease registries during a pandemic: Moving toward an international federation of patient registries.
Learning from disease registries during a pandemic: Moving toward an international federation of patient registries.
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DOI：
10.1016/j.clindermatol.2021.01.018
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发表时间：
2021-05
影响因子：
2.7
通讯作者：
Irvine AD
中科院分区：
文献类型：
--
作者：
Wall D;Alhusayen R;Arents B;Apfelbacher C;Balogh EA;Bokhari L;Bloem M;Bosma AL;Burton T;Castelo-Soccio L;Fagan N;Feldman SR;Fletcher G;Flohr C;Freeman E;French LE;Griffiths CEM;Hruza GJ;Ingram JR;Kappelman MD;Lara-Corrales I;Lim HW;Meah N;McMahon DE;Mahil SK;McNicoll I;Musters A;Naik HB;Sinclair R;Smith CH;Spuls P;Tobin DJ;York K;Irvine AD
高质量的皮肤病患者登记通常需要相当长的时间来开发和产生有意义的数据。开发时间受到登记处复杂性和监管障碍的影响，这些障碍在国家和体制上差异很大。冠状病毒病2019年(新冠肺炎)全球大流行的迅速出现，给卫生服务带来了前所未有的挑战。皮肤病界的应对动员包括快速开发和部署多个部分协调的国际患者登记，重新制定已建立的患者登记时间表。与患者组织的伙伴关系已经证明了包容性患者参与的关键性质。这一全球努力证明了皮肤科社区采用更有凝聚力的方法来开发患者登记和数据共享的价值、能力和必要性，这可能会带来无数的好处。这些措施包括提高有限资源的利用率，提高数据互操作性，提高快速收集有意义数据的能力，以及缩短生成真实证据的响应时间。我们呼吁全球皮肤病界支持建立一个国际患者登记联合会，以巩固和运用在这一大流行病中吸取的经验教训。这将提供一种持久的方法，将这些知识应用于维护和发展现在和未来可持续、连贯和有效的患者登记制度。
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.
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影响因子：
2.6
作者：
Kurz X;Perez-Gutthann S;ENCePP Steering Group
通讯作者：
ENCePP Steering Group
DOI：
10.1111/jdv.16132
发表时间：
2020-03-01
影响因子：
9.2
作者：
Kimball, A. B.;Crowley, J. J.;Sobell, J.
通讯作者：
Sobell, J.
影响因子：
13.8
作者：
Meah, Nekma;Wall, Dmitri;Sinclair, Rodney D.
通讯作者：
Sinclair, Rodney D.
特应性湿疹治疗 (TREAT) 注册工作组：国际德尔菲演习协议，旨在为国家特应性湿疹注册确定一组核心域和域项目。
影响因子：
2.5
作者：
Gerbens LA;Boyce AE;Wall D;Barbarot S;de Booij RJ;Deleuran M;Middelkamp-Hup MA;Roberts A;Vestergaard C;Weidinger S;Apfelbacher CJ;Irvine AD;Schmitt J;Williamson PR;Spuls PI;Flohr C
通讯作者：
Flohr C
影响因子：
2.9
作者：
Fransen, Frederike;Spuls, Phyllis;Wolkerstorfer, Albert
通讯作者：
Wolkerstorfer, Albert