TREatment of ATopic eczema (TREAT) Registry Taskforce: protocol for an international Delphi exercise to identify a core set of domains and domain items for national atopic eczema registries.
TREatment of ATopic eczema (TREAT) Registry Taskforce: protocol for an international Delphi exercise to identify a core set of domains and domain items for national atopic eczema registries.
复制标题
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。
DOI:
10.1186/s13063-016-1765-7
复制
发表时间:
2017-02-27
期刊:
影响因子:
2.5
通讯作者:
Flohr C
中科院分区:
文献类型:
--
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
Patients with moderate-to-severe atopic eczema (AE) often require photo- or systemic immunomodulatory therapies to induce disease remission and maintain long-term control. The current evidence to guide clinical management is small, despite the frequent and often off-label use of these treatments. Registries of patients on photo- and systemic immunomodulatory therapies could fill this gap, and the collection of a core set concerning these therapies in AE will allow direct comparisons across registries as well as data sharing and pooling. Using an eDelphi approach, the international TREatment of ATopic eczema (TREAT) Registry Taskforce aims to seek consensus between key stakeholders internationally on a core set of domains and domain items for AE patient registries with a research focus that collect data of children and adults on photo- and systemic immunomodulatory therapies. Participants from six stakeholder groups will be invited: doctors, nurses, non-clinical researchers, patients, as well as industry and regulatory body representatives. The eDelphi will comprise three sequential online rounds, requesting participants to rate the importance of each proposed domain and domain items. Participants will be able to add domains and domain items to the proposed list in round 1. A final consensus meeting will be held with representatives of each stakeholder group. Identifying a uniform core set of domains and domain items to be captured by AE patient registries will increase the utility of individual registries, and provide greater insight into the effectiveness, safety and cost-effectiveness of photo- and systemic immunomodulatory therapies to guide clinical management across dermatology centres and country borders. Not applicable. This eDelphi study was registered in the Core Outcome Measures for Effectiveness Trials (COMET) database. The online version of this article (doi:10.1186/s13063-016-1765-7) contains supplementary material, which is available to authorized users.