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

Research output: Contribution to journalArticle

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TREatment of ATopic eczema (TREAT) Registry Taskforce : Consensus on how and when to measure the core dataset for atopic eczema treatment research registries. / Vermeulen, F M; Gerbens, L A A; Bosma, A L; Apfelbacher, C J; Irvine, A; Arents, B W M; Barbarot, S; Deleuran, M; Eichenfield, L F; Manca, A; Schmitt, J; Vestergaard, C; Wall, D; Weidinger, S; Middelkamp-Hup, M A; Spuls, P I; Flohr, C.

In: British Journal of Dermatology, Vol. 181, No. 3, 04.02.2019, p. 492-504.

Research output: Contribution to journalArticle

Harvard

Vermeulen, FM, Gerbens, LAA, Bosma, AL, Apfelbacher, CJ, Irvine, A, 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 2019, 'TREatment of ATopic eczema (TREAT) Registry Taskforce: Consensus on how and when to measure the core dataset for atopic eczema treatment research registries', British Journal of Dermatology, vol. 181, no. 3, pp. 492-504. https://doi.org/10.1111/bjd.17715

APA

Vermeulen, F. M., Gerbens, L. A. A., Bosma, A. L., Apfelbacher, C. J., Irvine, A., Arents, B. W. M., ... Flohr, C. (2019). TREatment of ATopic eczema (TREAT) Registry Taskforce: Consensus on how and when to measure the core dataset for atopic eczema treatment research registries. British Journal of Dermatology, 181(3), 492-504. https://doi.org/10.1111/bjd.17715

Vancouver

Vermeulen FM, Gerbens LAA, Bosma AL, Apfelbacher CJ, Irvine A, Arents BWM et al. TREatment of ATopic eczema (TREAT) Registry Taskforce: Consensus on how and when to measure the core dataset for atopic eczema treatment research registries. British Journal of Dermatology. 2019 Feb 4;181(3):492-504. https://doi.org/10.1111/bjd.17715

Author

Vermeulen, F M ; Gerbens, L A A ; Bosma, A L ; Apfelbacher, C J ; Irvine, A ; Arents, B W M ; Barbarot, S ; Deleuran, M ; Eichenfield, L F ; Manca, A ; Schmitt, J ; Vestergaard, C ; Wall, D ; Weidinger, S ; Middelkamp-Hup, M A ; Spuls, P I ; Flohr, C. / TREatment of ATopic eczema (TREAT) Registry Taskforce : Consensus on how and when to measure the core dataset for atopic eczema treatment research registries. In: British Journal of Dermatology. 2019 ; Vol. 181, No. 3. pp. 492-504.

Bibtex - Download

@article{d50a239c299e48dba9a0d802e99b9cf2,
title = "TREatment of ATopic eczema (TREAT) Registry Taskforce: Consensus on how and when to measure the core dataset for atopic eczema treatment research registries",
abstract = "BACKGROUND: Comparative, real-life and long-term evidence on the effectiveness and safety of phototherapy and systemic therapy in moderate-to-severe atopic eczema (AE) is limited. Such data must come from well-designed prospective patient registries. Standardization of data collection is needed for direct comparisons and data pooling.OBJECTIVES: To reach a 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 patients with AE.METHODS: Proposals for the measurement instruments were based on recommendations of the Harmonising Outcome Measures for Eczema (HOME) initiative, the existing AE database of TREATgermany, systematic reviews of the literature and expert opinions. The proposals were discussed at three face-to-face consensus meetings, one teleconference and via e-mail. The frequency of follow-up visits was determined by an expert survey.RESULTS: A total of 16 experts from seven countries participated in the 'how to measure' consensus process and 12 external experts were consulted. A 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 in the comparability and pooling of data across centres and country borders, and enables international collaboration to assess the long-term effectiveness and safety of phototherapy and systemic therapy used in patients with AE. What's already known about this topic? Comparable, real-life and long-term data on the effectiveness and safety of phototherapy and systemic therapy in patients with atopic eczema (AE) are needed. There is a high diversity of outcomes and instruments used in AE research, which require harmonization to enhance comparability and allow data pooling. What does this study add? Our taskforce has reached international consensus on how and when to measure core domain items for national AE research registries. This core dataset is now available for use by researchers worldwide and will aid in the collection of unified data. What are the clinical implications of this work? The data collected through this core dataset will help to gain better insights into the long-term effectiveness and safety of phototherapy and systemic therapy in AE and will provide important information for clinical practice. Standardization of such data collection at the national level will also allow direct data comparisons and pooling across country borders (e.g. in the analysis of treatment-related adverse events that require large patient numbers).",
author = "Vermeulen, {F M} and Gerbens, {L A A} and Bosma, {A L} and Apfelbacher, {C J} and A Irvine and Arents, {B W M} and S Barbarot and M Deleuran and Eichenfield, {L F} and A Manca and J Schmitt and C Vestergaard and D Wall and S Weidinger and Middelkamp-Hup, {M A} and Spuls, {P I} and C Flohr",
note = "{\circledC} 2019 The Authors.",
year = "2019",
month = "2",
day = "4",
doi = "10.1111/bjd.17715",
language = "English",
volume = "181",
pages = "492--504",
journal = "British Journal of Dermatology",
issn = "0007-0963",
publisher = "Wiley-Blackwell",
number = "3",

}

RIS (suitable for import to EndNote) - Download

TY - JOUR

T1 - TREatment of ATopic eczema (TREAT) Registry Taskforce

T2 - British Journal of Dermatology

AU - Vermeulen, F M

AU - Gerbens, L A A

AU - Bosma, A L

AU - Apfelbacher, C J

AU - Irvine, A

AU - Arents, B W M

AU - Barbarot, S

AU - Deleuran, M

AU - Eichenfield, L F

AU - Manca, A

AU - Schmitt, J

AU - Vestergaard, C

AU - Wall, D

AU - Weidinger, S

AU - Middelkamp-Hup, M A

AU - Spuls, P I

AU - Flohr, C

N1 - © 2019 The Authors.

PY - 2019/2/4

Y1 - 2019/2/4

N2 - BACKGROUND: Comparative, real-life and long-term evidence on the effectiveness and safety of phototherapy and systemic therapy in moderate-to-severe atopic eczema (AE) is limited. Such data must come from well-designed prospective patient registries. Standardization of data collection is needed for direct comparisons and data pooling.OBJECTIVES: To reach a 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 patients with AE.METHODS: Proposals for the measurement instruments were based on recommendations of the Harmonising Outcome Measures for Eczema (HOME) initiative, the existing AE database of TREATgermany, systematic reviews of the literature and expert opinions. The proposals were discussed at three face-to-face consensus meetings, one teleconference and via e-mail. The frequency of follow-up visits was determined by an expert survey.RESULTS: A total of 16 experts from seven countries participated in the 'how to measure' consensus process and 12 external experts were consulted. A 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 in the comparability and pooling of data across centres and country borders, and enables international collaboration to assess the long-term effectiveness and safety of phototherapy and systemic therapy used in patients with AE. What's already known about this topic? Comparable, real-life and long-term data on the effectiveness and safety of phototherapy and systemic therapy in patients with atopic eczema (AE) are needed. There is a high diversity of outcomes and instruments used in AE research, which require harmonization to enhance comparability and allow data pooling. What does this study add? Our taskforce has reached international consensus on how and when to measure core domain items for national AE research registries. This core dataset is now available for use by researchers worldwide and will aid in the collection of unified data. What are the clinical implications of this work? The data collected through this core dataset will help to gain better insights into the long-term effectiveness and safety of phototherapy and systemic therapy in AE and will provide important information for clinical practice. Standardization of such data collection at the national level will also allow direct data comparisons and pooling across country borders (e.g. in the analysis of treatment-related adverse events that require large patient numbers).

AB - BACKGROUND: Comparative, real-life and long-term evidence on the effectiveness and safety of phototherapy and systemic therapy in moderate-to-severe atopic eczema (AE) is limited. Such data must come from well-designed prospective patient registries. Standardization of data collection is needed for direct comparisons and data pooling.OBJECTIVES: To reach a 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 patients with AE.METHODS: Proposals for the measurement instruments were based on recommendations of the Harmonising Outcome Measures for Eczema (HOME) initiative, the existing AE database of TREATgermany, systematic reviews of the literature and expert opinions. The proposals were discussed at three face-to-face consensus meetings, one teleconference and via e-mail. The frequency of follow-up visits was determined by an expert survey.RESULTS: A total of 16 experts from seven countries participated in the 'how to measure' consensus process and 12 external experts were consulted. A 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 in the comparability and pooling of data across centres and country borders, and enables international collaboration to assess the long-term effectiveness and safety of phototherapy and systemic therapy used in patients with AE. What's already known about this topic? Comparable, real-life and long-term data on the effectiveness and safety of phototherapy and systemic therapy in patients with atopic eczema (AE) are needed. There is a high diversity of outcomes and instruments used in AE research, which require harmonization to enhance comparability and allow data pooling. What does this study add? Our taskforce has reached international consensus on how and when to measure core domain items for national AE research registries. This core dataset is now available for use by researchers worldwide and will aid in the collection of unified data. What are the clinical implications of this work? The data collected through this core dataset will help to gain better insights into the long-term effectiveness and safety of phototherapy and systemic therapy in AE and will provide important information for clinical practice. Standardization of such data collection at the national level will also allow direct data comparisons and pooling across country borders (e.g. in the analysis of treatment-related adverse events that require large patient numbers).

U2 - 10.1111/bjd.17715

DO - 10.1111/bjd.17715

M3 - Article

VL - 181

SP - 492

EP - 504

JO - British Journal of Dermatology

JF - British Journal of Dermatology

SN - 0007-0963

IS - 3

ER -