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.

Autor:	Gerbens LA; Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands. l.a.gerbens@amc.uva.nl., Boyce AE; Unit for Population-Based Dermatology Research, St. John's Institute of Dermatology, Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UK., Wall D; Department of Paediatric Dermatology, Our Lady's Children's Hospital, Crumlin, Dublin, Ireland.; Irish Skin Foundation, Dublin, Ireland., Barbarot S; Department of Dermatology, Nantes University Hospital, Nantes, France., de Booij RJ; Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands., Deleuran M; Department of Dermatology and Venereology, Aarhus University Hospital, Aarhus, Denmark., Middelkamp-Hup MA; Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands., Roberts A; Nottingham Support Group for Carers of Children with Eczema, Nottingham, UK., Vestergaard C; Department of Dermatology and Venereology, Aarhus University Hospital, Aarhus, Denmark., Weidinger S; Department of Dermatology and Allergy, University Hospital Schleswig-Holstein, Campus Kiel, Kiel, Germany., Apfelbacher CJ; Medical Sociology, Institute of Epidemiology and Preventive Medicine, University of Regensburg, Regensburg, Germany., Irvine AD; Department of Paediatric Dermatology, Our Lady's Children's Hospital, Crumlin, Dublin, Ireland.; Irish Skin Foundation, Dublin, Ireland.; Department of Clinical Medicine, Trinity College Dublin, Dublin, Ireland.; National Children's Research Centre, Dublin, Ireland., Schmitt J; Center for Evidence-based Healthcare, Medizinische Fakultät Carl Gustav Carus, TU Dresden, Dresden, Germany.; University Allergy Center, University Hospital Carl Gustav Carus Dresden, Dresden, Germany., Williamson PR; MRC North West Hub for Trials Methodology Research, Department of Biostatistics, University of Liverpool, Liverpool, UK., Spuls PI; Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands., Flohr C; Unit for Population-Based Dermatology Research, St. John's Institute of Dermatology, Guy's and St Thomas' NHS Foundation Trust and King's College London, London, UK.
Jazyk:	angličtina
Zdroj:	Trials [Trials] 2017 Feb 27; Vol. 18 (1), pp. 87. Date of Electronic Publication: 2017 Feb 27.
DOI:	10.1186/s13063-016-1765-7
Abstrakt:	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. Trial Registration: Not applicable. This eDelphi study was registered in the Core Outcome Measures for Effectiveness Trials (COMET) database.
Databáze:	MEDLINE
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