. 2017 Feb 27;18(1):87.

doi: 10.1186/s13063-016-1765-7.

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

Louise A A Gerbens¹, Aaron E Boyce², Dmitri Wall^{3

4}, Sebastien Barbarot⁵, Richard J de Booij⁶, Mette Deleuran⁷, Maritza A Middelkamp-Hup⁶, Amanda Roberts⁸, Christian Vestergaard⁷, Stephan Weidinger⁹, Christian J Apfelbacher¹⁰, Alan D Irvine^{3

4

11

12}, Jochen Schmitt^{13

14}, Paula R Williamson¹⁵, Phyllis I Spuls⁶, Carsten Flohr²

Affiliations

¹ Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands. l.a.gerbens@amc.uva.nl.
² 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.
³ Department of Paediatric Dermatology, Our Lady's Children's Hospital, Crumlin, Dublin, Ireland.
⁴ Irish Skin Foundation, Dublin, Ireland.
⁵ Department of Dermatology, Nantes University Hospital, Nantes, France.
⁶ Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands.
⁷ Department of Dermatology and Venereology, Aarhus University Hospital, Aarhus, Denmark.
⁸ Nottingham Support Group for Carers of Children with Eczema, Nottingham, UK.
⁹ Department of Dermatology and Allergy, University Hospital Schleswig-Holstein, Campus Kiel, Kiel, Germany.
¹⁰ Medical Sociology, Institute of Epidemiology and Preventive Medicine, University of Regensburg, Regensburg, Germany.
¹¹ Department of Clinical Medicine, Trinity College Dublin, Dublin, Ireland.
¹² National Children's Research Centre, Dublin, Ireland.
¹³ Center for Evidence-based Healthcare, Medizinische Fakultät Carl Gustav Carus, TU Dresden, Dresden, Germany.
¹⁴ University Allergy Center, University Hospital Carl Gustav Carus Dresden, Dresden, Germany.
¹⁵ MRC North West Hub for Trials Methodology Research, Department of Biostatistics, University of Liverpool, Liverpool, UK.

PMID: 28241851
PMCID: PMC5330088
DOI: 10.1186/s13063-016-1765-7

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

Louise A A Gerbens et al. Trials. 2017.

. 2017 Feb 27;18(1):87.

doi: 10.1186/s13063-016-1765-7.

Authors

Affiliations

¹ Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands. l.a.gerbens@amc.uva.nl.
² 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.
³ Department of Paediatric Dermatology, Our Lady's Children's Hospital, Crumlin, Dublin, Ireland.
⁴ Irish Skin Foundation, Dublin, Ireland.
⁵ Department of Dermatology, Nantes University Hospital, Nantes, France.
⁶ Department of Dermatology, Academic Medical Centre, University of Amsterdam, Meibergdreef 9, 1105, AZ, Amsterdam, The Netherlands.
⁷ Department of Dermatology and Venereology, Aarhus University Hospital, Aarhus, Denmark.
⁸ Nottingham Support Group for Carers of Children with Eczema, Nottingham, UK.
⁹ Department of Dermatology and Allergy, University Hospital Schleswig-Holstein, Campus Kiel, Kiel, Germany.
¹⁰ Medical Sociology, Institute of Epidemiology and Preventive Medicine, University of Regensburg, Regensburg, Germany.
¹¹ Department of Clinical Medicine, Trinity College Dublin, Dublin, Ireland.
¹² National Children's Research Centre, Dublin, Ireland.
¹³ Center for Evidence-based Healthcare, Medizinische Fakultät Carl Gustav Carus, TU Dresden, Dresden, Germany.
¹⁴ University Allergy Center, University Hospital Carl Gustav Carus Dresden, Dresden, Germany.
¹⁵ MRC North West Hub for Trials Methodology Research, Department of Biostatistics, University of Liverpool, Liverpool, UK.

PMID: 28241851
PMCID: PMC5330088
DOI: 10.1186/s13063-016-1765-7

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.

Trial registration: Not applicable. This eDelphi study was registered in the Core Outcome Measures for Effectiveness Trials (COMET) database.

Keywords: Atopic dermatitis; Atopic eczema; Consensus methods; Core set; Daily practice data; Delphi; Disease registries; Immunomodulatory therapies; Interoperability; Patient registries.

PubMed Disclaimer

Figures

**Fig. 1**
The TREatment of ATopic eczema (TREAT) Delphi exercise

See this image and copyright information in PMC

Cited by

TREatment of ATopic eczema (TREAT) Registry Taskforce: consensus on how and when to measure the core dataset for atopic eczema treatment research registries.
Vermeulen FM, Gerbens LAA, Bosma AL, Apfelbacher CJ, Irvine AD, Arents BWM, Barbarot S, Deleuran M, Eichenfield LF, Manca A, Schmitt J, Vestergaard C, Wall D, Weidinger S, Middelkamp-Hup MA, Spuls PI, Flohr C; International TREAT Registry Taskforce. Vermeulen FM, et al. Br J Dermatol. 2019 Sep;181(3):492-504. doi: 10.1111/bjd.17715. Epub 2019 Jun 23. Br J Dermatol. 2019. PMID: 30719709 Free PMC article.
TREatment of ATopic eczema (TREAT) Registry Taskforce: an international Delphi exercise to identify a core set of domains and domain items for national atopic eczema photo- and systemic therapy registries.
Gerbens LAA, Apfelbacher CJ, Irvine AD, Barbarot S, de Booij RJ, Boyce AE, Deleuran M, Eichenfield LF, Hof MH, Middelkamp-Hup MA, Roberts A, Schmitt J, Vestergaard C, Wall D, Weidinger S, Williamson PR, Flohr C, Spuls PI; international TREAT Registry Taskforce. Gerbens LAA, et al. Br J Dermatol. 2019 Apr;180(4):790-801. doi: 10.1111/bjd.16714. Epub 2018 Aug 3. Br J Dermatol. 2019. PMID: 29761486 Free PMC article.
Systemic treatment of children and adolescents with atopic dermatitis aged ≥2 years: a Delphi consensus project mapping expert opinion in Northern Europe.
de Graaf M, Janmohamed SR, Schuttelaar MLA, Agner T, Alfonso JH, De Schepper S, Deleuran M, Despontin K, Elenius V, Ghislain PD, Huilaja L, Johansson EK, Kvenshagen BK, Mandelin JM, Olset H, Svensson A, van Tuyll van Serooskerken AM, Thyssen JP, Vestergaard C. de Graaf M, et al. J Eur Acad Dermatol Venereol. 2022 Nov;36(11):2153-2165. doi: 10.1111/jdv.18410. Epub 2022 Jul 19. J Eur Acad Dermatol Venereol. 2022. PMID: 35793471 Free PMC article.
Learning from disease registries during a pandemic: Moving toward an international federation of patient registries.
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. Wall D, et al. Clin Dermatol. 2021 May-Jun;39(3):467-478. doi: 10.1016/j.clindermatol.2021.01.018. Epub 2021 Apr 6. Clin Dermatol. 2021. PMID: 34518006 Free PMC article.
Use of systemic corticosteroids for atopic dermatitis: International Eczema Council consensus statement.
Drucker AM, Eyerich K, de Bruin-Weller MS, Thyssen JP, Spuls PI, Irvine AD, Girolomoni G, Dhar S, Flohr C, Murrell DF, Paller AS, Guttman-Yassky E. Drucker AM, et al. Br J Dermatol. 2018 Mar;178(3):768-775. doi: 10.1111/bjd.15928. Epub 2018 Jan 28. Br J Dermatol. 2018. PMID: 28865094 Free PMC article.

See all "Cited by" articles

References

1. Weidinger S, Novak N. Atopic dermatitis. Lancet. 2016;387(10023):1109–22. doi: 10.1016/S0140-6736(15)00149-X. - DOI - PubMed
1. Silverberg JI. Health care utilization, patient costs, and access to care in US adults with eczema: a population-based study. JAMA Dermatol. 2015;151(7):743–52. doi: 10.1001/jamadermatol.2014.5432. - DOI - PubMed
1. McAleer MA, Flohr C, Irvine AD. Management of difficult and severe eczema in childhood. BMJ. 2012;345:e4770. doi: 10.1136/bmj.e4770. - DOI - PubMed
1. European Medicines Agency. Questions and answers on Sandimmun, Sandimmun Neoral and associated names (ciclosporin, 10, 25, 50 and 100 mg capsules, 100 mg/ml oral solution and 50 mg/ml concentrate for solution for infusion). 2013. http://www.ema.europa.eu/docs/en_GB/document_library/Referrals_document/.... Accessed 1 Jan 2017.
1. Roekevisch E, Spuls PI, Kuester D, et al. Efficacy and safety of systemic treatments for moderate-to-severe atopic dermatitis: a systematic review. J Allergy Clin Immunol. 2014;133(2):429–38. doi: 10.1016/j.jaci.2013.07.049. - DOI - PubMed

Publication types

Actions
Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions

Substances

Actions

LinkOut - more resources

Full Text Sources
Other Literature Sources
- scite Smart Citations
Medical
- ClinicalTrials.gov
Miscellaneous
- NCI CPTAC Assay Portal

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Affiliations

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

Authors

Affiliations

Abstract

Figures

Similar articles

Cited by

References

Publication types

MeSH terms

Substances

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical

Miscellaneous

Abstract

Figures

Similar articles

Cited by

References

Publication types

MeSH terms

Substances

Related information

LinkOut - more resources

Full Text Sources

Other Literature Sources

Medical

Miscellaneous