Gerbens, Louise A. A. and Boyce, Aaron E. and Wall, Dmitri and Barbarot, Sebastien and de Booij, Richard J. and Deleuran, Mette and Middelkamp-Hup, Maritza A. and Roberts, Amanda and Vestergaard, Christian and Weidinger, Stephan and Apfelbacher, Christian J. and Irvine, Alan D. and Schmitt, Jochen and Williamson, Paula R. and Spuls, Phyllis I. and Flohr, Carsten (2017) 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. TRIALS, 18: 87. ISSN 1745-6215,
Full text not available from this repository. (Request a copy)Abstract
Background: 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. Methods/design: 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. Discussion: 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.
| Item Type: | Article |
|---|---|
| Uncontrolled Keywords: | OUTCOME MEASURES; ADULT PATIENTS; DERMATITIS; MANAGEMENT; CONSENSUS; GUIDELINES; CARE; HOME; Atopic eczema; Atopic dermatitis; Delphi; Consensus methods; Patient registries; Disease registries; Core set; Daily practice data; Immunomodulatory therapies; Interoperability |
| Subjects: | 600 Technology > 610 Medical sciences Medicine |
| Divisions: | Medicine > Institut für Epidemiologie und Präventivmedizin > Medical Sociology |
| Depositing User: | Dr. Gernot Deinzer |
| Date Deposited: | 14 Dec 2018 13:01 |
| Last Modified: | 20 Feb 2019 13:42 |
| URI: | https://pred.uni-regensburg.de/id/eprint/373 |
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