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Br J Dermatol. 2019 Feb 4. doi: 10.1111/bjd.17715. [Epub ahead of print]

TREatment of ATopic eczema (TREAT) Registry Taskforce: consensus on how and when to measure the core dataset for atopic eczema treatment research registries.

Author information

1
Amsterdam UMC, University of Amsterdam, Department of Dermatology, Amsterdam Public Health, Infection and Immunity, Meibergdreef 9, Amsterdam, The Netherlands.
2
Medical Sociology, Institute of Epidemiology and Preventive Medicine, University of Regensburg, Regensburg, Germany.
3
Department of Paediatric Dermatology, Our Lady's Children's Hospital, Crumlin, Dublin, Ireland.
4
Department of Clinical Medicine, Trinity College Dublin, Dublin, Ireland.
5
National Children's Research Centre, Dublin, Ireland.
6
Dutch Association for People with Atopic Dermatitis, Nijkerk, Netherlands.
7
Department of Dermatology, Nantes University Hospital, Nantes, France.
8
Department of Dermatology and Venereology, Aarhus University Hospital, Aarhus, Denmark.
9
Departments of Dermatology and Pediatrics, University of California, San Diego, USA.
10
Centre for Health Economics, University of York, York, UK.
11
Centre for Evidence-based Healthcare, Medizinische Fakult├Ąt Carl Gustav Carus, TU Dresden, Dresden, Germany.
12
University Allergy Centre, University Hospital Carl Gustav Carus, Dresden, Germany.
13
Irish Skin Foundation, Dublin, Ireland.
14
Department of Dermatology and Allergy, University Hospital Schleswig-Holstein, Campus Kiel, Kiel, Germany.
15
Unit for Population-Based Dermatology Research, St John's Institute of Dermatology, Guy's& St Thomas' NHS Foundation Trust and King's College London, London, UK.

Abstract

BACKGROUND:

Comparative, real-life and long-term evidence on the effectiveness and safety of photo- and systemic therapy in moderate-to-severe atopic eczema (AE) is limited. Such data must come from well-designed prospective patient registries. Standardisation of data collection is needed for direct comparisons and data pooling.

OBJECTIVES:

To reach consensus on how and when to measure the previously defined domain items of the TREatment of Atopic eczema (TREAT) Registry Taskforce core dataset for research registries for paediatric and adult AE patients.

METHODS:

Proposals for the measurement instruments were based on the recommendations of the Harmonising Outcome Measures for Eczema (HOME) initiative, the existing AE database of TREATgermany, expert opinions and systematic reviews of the literature. The proposals were discussed at multiple face-to-face consensus meetings, one teleconference and via email. The frequency of follow-up visits was determined by an expert survey.

RESULTS:

A total of 16 experts from 7 countries participated in the 'how to measure' consensus process and 12 external experts were consulted. Consensus was reached for all domain items on how they should be measured by assigning measurement instruments. A minimum follow-up frequency of initially 4 weeks after commencing treatment, then every 3 months while on treatment and every 6 months while off treatment was defined.

CONCLUSIONS:

This core dataset for national AE research registries will aid the comparability and pooling of data across centres and country borders and enable international collaboration to assess the long-term effectiveness and safety of photo- and systemic therapy used in patients with AE. This article is protected by copyright. All rights reserved.

PMID:
30719709
DOI:
10.1111/bjd.17715

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