Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce

Angela L. Bosma; Annelie H. Musters; Manja Bloem; Louise A. A. Gerbens; Maritza A. Middelkamp-Hup; Eva Haufe; Jochen Schmitt; Sebastien Barbarot; Julien Seneschal; Delphine Staumont-Sallé; Emma K. Johansson; Maria Bradley; Laura B. von Kobyletzki; Ida Vittrup; Iben Frier Ruge; Jacob P. Thyssen; Christian Vestergaard; Marina de Vega; Ignacio García-Doval; Andrea Chiricozzi; Luca Stingeni; Piergiacomo Calzavara-Pinton; Michael R. Ardern-Jones; Nick J. Reynolds; Carsten Flohr; Phyllis I. Spuls

doi:https://doi.org/10.1111/jdv.18566

Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce

Angela L. Bosma, Annelie H. Musters, Manja Bloem, Louise A. A. Gerbens, Maritza A. Middelkamp-Hup, Eva Haufe, Jochen Schmitt, Sebastien Barbarot, Julien Seneschal, Delphine Staumont-Sallé, Emma K. Johansson, Maria Bradley, Laura B. von Kobyletzki, Ida Vittrup, Iben Frier Ruge, Jacob P. Thyssen, Christian Vestergaard, Marina de Vega, Ignacio García-Doval, Andrea ChiricozziLuca Stingeni, Piergiacomo Calzavara-Pinton, Michael R. Ardern-Jones, Nick J. Reynolds, Carsten Flohr, Phyllis I. Spuls

Research output: Contribution to journal › Article › Academic › peer-review

8 Citations (Scopus)

Abstract

Background: The TREatment of ATopic eczema (TREAT) Registry Taskforce is a collaborative international network of registries collecting data of atopic eczema (AE) patients receiving systemic and phototherapy with the common goal to provide long-term real-world data on the effectiveness, safety and cost-effectiveness of therapies. A core dataset, consisting of domains and domain items with corresponding measurement instruments, has been developed to harmonize data collection. Objectives: We aimed to give an overview of the status and characteristics of the eight established TREAT registries, and to perform a mapping exercise to examine the degree of overlap and pooling ability between the national registry datasets. This will allow us to determine which research questions can be answered in the future by pooling data. Methods: All eight registries were asked to share their dataset and information on the current status and characteristics. The overlap between the core dataset and each registry dataset was identified (according to the domains, domain items and measurement instruments of the TREAT core dataset). Results and conclusions: A total of 4702 participants have been recruited in the eight registries as of 1st of May 2022. Of the 69 core dataset domain items, data pooling was possible for 69 domain item outcomes in TREAT NL (the Netherlands), 61 items in A-STAR (UK and Ireland), 38 items in TREATgermany (Germany), 36 items in FIRST (France), 33 items in AtopyReg (Italy), 29 items in Biobadatop (Spain), 28 items in SCRATCH (Denmark) and 20 items in SwedAD (Sweden). Pooled analyses across all registries can be performed on multiple important domain items, covering the main aims of analysing data on the (cost-)effectiveness and safety of AE therapies. These results will facilitate future comparative or joint analyses.

Original language	English
Pages (from-to)	123-136
Number of pages	14
Journal	Journal of the European Academy of Dermatology and Venereology
Volume	37
Issue number	1
Early online date	2022
DOIs	https://doi.org/10.1111/jdv.18566
Publication status	Published - 1 Jan 2023

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https://doi.org/10.1111/jdv.18566

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Bosma, A. L., Musters, A. H., Bloem, M., Gerbens, L. A. A., Middelkamp-Hup, M. A., Haufe, E., Schmitt, J., Barbarot, S., Seneschal, J., Staumont-Sallé, D., Johansson, E. K., Bradley, M., von Kobyletzki, L. B., Vittrup, I., Frier Ruge, I., Thyssen, J. P., Vestergaard, C., de Vega, M., García-Doval, I., ... Spuls, P. I. (2023). Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce. Journal of the European Academy of Dermatology and Venereology, 37(1), 123-136. https://doi.org/10.1111/jdv.18566

@article{8d342c99059b4a86af7b8dcbdf31cbca,

title = "Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce",

abstract = "Background: The TREatment of ATopic eczema (TREAT) Registry Taskforce is a collaborative international network of registries collecting data of atopic eczema (AE) patients receiving systemic and phototherapy with the common goal to provide long-term real-world data on the effectiveness, safety and cost-effectiveness of therapies. A core dataset, consisting of domains and domain items with corresponding measurement instruments, has been developed to harmonize data collection. Objectives: We aimed to give an overview of the status and characteristics of the eight established TREAT registries, and to perform a mapping exercise to examine the degree of overlap and pooling ability between the national registry datasets. This will allow us to determine which research questions can be answered in the future by pooling data. Methods: All eight registries were asked to share their dataset and information on the current status and characteristics. The overlap between the core dataset and each registry dataset was identified (according to the domains, domain items and measurement instruments of the TREAT core dataset). Results and conclusions: A total of 4702 participants have been recruited in the eight registries as of 1st of May 2022. Of the 69 core dataset domain items, data pooling was possible for 69 domain item outcomes in TREAT NL (the Netherlands), 61 items in A-STAR (UK and Ireland), 38 items in TREATgermany (Germany), 36 items in FIRST (France), 33 items in AtopyReg (Italy), 29 items in Biobadatop (Spain), 28 items in SCRATCH (Denmark) and 20 items in SwedAD (Sweden). Pooled analyses across all registries can be performed on multiple important domain items, covering the main aims of analysing data on the (cost-)effectiveness and safety of AE therapies. These results will facilitate future comparative or joint analyses.",

author = "Bosma, {Angela L.} and Musters, {Annelie H.} and Manja Bloem and Gerbens, {Louise A. A.} and Middelkamp-Hup, {Maritza A.} and Eva Haufe and Jochen Schmitt and Sebastien Barbarot and Julien Seneschal and Delphine Staumont-Sall{\'e} and Johansson, {Emma K.} and Maria Bradley and {von Kobyletzki}, {Laura B.} and Ida Vittrup and {Frier Ruge}, Iben and Thyssen, {Jacob P.} and Christian Vestergaard and {de Vega}, Marina and Ignacio Garc{\'i}a-Doval and Andrea Chiricozzi and Luca Stingeni and Piergiacomo Calzavara-Pinton and Ardern-Jones, {Michael R.} and Reynolds, {Nick J.} and Carsten Flohr and Spuls, {Phyllis I.}",

note = "Funding Information: P.I. Spuls has done consultancies in the past for Sanofi 111017 and AbbVie 041217 (unpaid), received a departmental independent research grants from pharmaceutical industries since December 2019 for the TREAT NL registry, is involved in performing clinical trials with many pharmaceutical industries that manufacture drugs used for the treatment of e.g. psoriasis and atopic dermatitis, for which financial compensation is paid to the department/hospital and, is Chief Investigator (CI) of the systemic and phototherapy atopic eczema registry (TREAT NL) for adults and children and one of the main investigators of the SECURE‐AD registry. C. Flohr is Chief Investigator of the UK National Institute for Health Research–funded TREAT (ISRCTN15837754) and SOFTER ( ClinicalTrials.gov : NCT03270566) trials and the UK‐Irish Atopic Eczema Systemic Therapy Register (A‐STAR; ISRCTN11210918) and is a principal investigator in the European Union Horizon 2020–funded BIOMAP Consortium ( http://www.biomap‐imi.eu/ ). He is also Chief Investigator of the EU Joint Program Initiative TRANS‐FOODS consortium. His department has also received investigator‐led funding from Sanofi‐Genzyme for skin microbiome work. L.A.A. Gerbens is one of the main investigators of the TREAT NL registry. She has no further conflicts of interest. A. Chiricozzi is advisory board member, consultant, speaker, investigator in clinical trials for AbbVie, Almirall, Biogen, Fresenius Kabi, Leo Pharma, Lilly, Janssen, Novartis, Sanofi Genzyme and UCB Pharma. M.A. Middelkamp‐Hup is consultant for Sanofi and Pfizer and one of the main investigators of the TREAT NL registry. E.K. Johansson received speaker honoraria and/or been a consultant for AbbVie, ACO, Galenica, LEO Pharma, Novartis, and Sanofi‐Genzyme. E. Haufe is coordinator of TREATgermany; no further conflicts of interest. J. Schmitt is PI of TREATgermany; institutional funding of IITs from Sanofi, Novartis, Pfizer, ALK; consultancies for Sanofi, Lilly, Novartis, ALK. I. Garc{\'i}a‐Doval received financial compensation for talks unrelated to atopic dermatitis from UCB and Novartis, and a travel grant from Janssen. N. J. Reynolds has received, through Newcastle University, research grant funding, funding for lectures and/or travel support from Celgene, Genentech and Sanofi‐Genzyme. M. R. Ardern‐Jones has acted as a collaborative researcher/consultant/speaker for AbbVie, Pfizer, Sanofi Genzyme, Ducentis, Hosei Septares, Leo Pharma, Novartis. I. Vittrup has received salary from research funding from Sanofi and Regeneron Pharmaceuticals, Inc. S. Barbarot is investigator or speaker for Almirall, Sanofi‐Genzyme, Abbvie, Novartis, Janssen, Leo‐Pharma, Pfizer, Eli Lilly, UCB Pharma. D. Staumont‐Sall{\'e} is investigator or speaker or member of advisory board for Abbvie, AstraZeneca, Eli Lilly, Galderma, Janssen, Leo‐Pharma, Novartis, Pfizer, Sanofi‐Genzyme, UCB Pharma. J. Seneschal is investigator or speaker or member of advisory board for Abbvie, Eli Lilly, Galderma, Janssen, Leo‐Pharma, Novartis, Pfizer, Sanofi‐Genzyme. J. Thyssen is advisor, speaker or investigator for Abbvie, Arena, Pfizer, LEO Pharma, Regeneron, Sanofi‐Genzyme, Almirall, and Eli Lilly. He has received research grants from Regeneron and Sanofi‐Genzyme. C. Vestergaard is Speaker/honorarium for Sanofi, Leo Pharma, Abbvie, Pfizer, Pierre Fabre, AstraZeneca. No other disclosures were reported. Publisher Copyright: {\textcopyright} 2022 The Authors. Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.",

year = "2023",

month = jan,

day = "1",

doi = "https://doi.org/10.1111/jdv.18566",

language = "English",

volume = "37",

pages = "123--136",

journal = "Journal of the European Academy of Dermatology and Venereology",

issn = "0926-9959",

publisher = "Wiley-Blackwell",

number = "1",

}

Bosma, AL, Musters, AH, Bloem, M, Gerbens, LAA , Middelkamp-Hup, MA, Haufe, E, Schmitt, J, Barbarot, S, Seneschal, J, Staumont-Sallé, D, Johansson, EK, Bradley, M, von Kobyletzki, LB, Vittrup, I, Frier Ruge, I, Thyssen, JP, Vestergaard, C, de Vega, M, García-Doval, I, Chiricozzi, A, Stingeni, L, Calzavara-Pinton, P, Ardern-Jones, MR, Reynolds, NJ, Flohr, C & Spuls, PI 2023, 'Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce', Journal of the European Academy of Dermatology and Venereology, vol. 37, no. 1, pp. 123-136. https://doi.org/10.1111/jdv.18566

Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce. / Bosma, Angela L.; Musters, Annelie H.; Bloem, Manja et al.
In: Journal of the European Academy of Dermatology and Venereology, Vol. 37, No. 1, 01.01.2023, p. 123-136.

Research output: Contribution to journal › Article › Academic › peer-review

TY - JOUR

T1 - Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce

AU - Bosma, Angela L.

AU - Musters, Annelie H.

AU - Bloem, Manja

AU - Gerbens, Louise A. A.

AU - Middelkamp-Hup, Maritza A.

AU - Haufe, Eva

AU - Schmitt, Jochen

AU - Barbarot, Sebastien

AU - Seneschal, Julien

AU - Staumont-Sallé, Delphine

AU - Johansson, Emma K.

AU - Bradley, Maria

AU - von Kobyletzki, Laura B.

AU - Vittrup, Ida

AU - Frier Ruge, Iben

AU - Thyssen, Jacob P.

AU - Vestergaard, Christian

AU - de Vega, Marina

AU - García-Doval, Ignacio

AU - Chiricozzi, Andrea

AU - Stingeni, Luca

AU - Calzavara-Pinton, Piergiacomo

AU - Ardern-Jones, Michael R.

AU - Reynolds, Nick J.

AU - Flohr, Carsten

AU - Spuls, Phyllis I.

N1 - Funding Information: P.I. Spuls has done consultancies in the past for Sanofi 111017 and AbbVie 041217 (unpaid), received a departmental independent research grants from pharmaceutical industries since December 2019 for the TREAT NL registry, is involved in performing clinical trials with many pharmaceutical industries that manufacture drugs used for the treatment of e.g. psoriasis and atopic dermatitis, for which financial compensation is paid to the department/hospital and, is Chief Investigator (CI) of the systemic and phototherapy atopic eczema registry (TREAT NL) for adults and children and one of the main investigators of the SECURE‐AD registry. C. Flohr is Chief Investigator of the UK National Institute for Health Research–funded TREAT (ISRCTN15837754) and SOFTER ( ClinicalTrials.gov : NCT03270566) trials and the UK‐Irish Atopic Eczema Systemic Therapy Register (A‐STAR; ISRCTN11210918) and is a principal investigator in the European Union Horizon 2020–funded BIOMAP Consortium ( http://www.biomap‐imi.eu/ ). He is also Chief Investigator of the EU Joint Program Initiative TRANS‐FOODS consortium. His department has also received investigator‐led funding from Sanofi‐Genzyme for skin microbiome work. L.A.A. Gerbens is one of the main investigators of the TREAT NL registry. She has no further conflicts of interest. A. Chiricozzi is advisory board member, consultant, speaker, investigator in clinical trials for AbbVie, Almirall, Biogen, Fresenius Kabi, Leo Pharma, Lilly, Janssen, Novartis, Sanofi Genzyme and UCB Pharma. M.A. Middelkamp‐Hup is consultant for Sanofi and Pfizer and one of the main investigators of the TREAT NL registry. E.K. Johansson received speaker honoraria and/or been a consultant for AbbVie, ACO, Galenica, LEO Pharma, Novartis, and Sanofi‐Genzyme. E. Haufe is coordinator of TREATgermany; no further conflicts of interest. J. Schmitt is PI of TREATgermany; institutional funding of IITs from Sanofi, Novartis, Pfizer, ALK; consultancies for Sanofi, Lilly, Novartis, ALK. I. García‐Doval received financial compensation for talks unrelated to atopic dermatitis from UCB and Novartis, and a travel grant from Janssen. N. J. Reynolds has received, through Newcastle University, research grant funding, funding for lectures and/or travel support from Celgene, Genentech and Sanofi‐Genzyme. M. R. Ardern‐Jones has acted as a collaborative researcher/consultant/speaker for AbbVie, Pfizer, Sanofi Genzyme, Ducentis, Hosei Septares, Leo Pharma, Novartis. I. Vittrup has received salary from research funding from Sanofi and Regeneron Pharmaceuticals, Inc. S. Barbarot is investigator or speaker for Almirall, Sanofi‐Genzyme, Abbvie, Novartis, Janssen, Leo‐Pharma, Pfizer, Eli Lilly, UCB Pharma. D. Staumont‐Sallé is investigator or speaker or member of advisory board for Abbvie, AstraZeneca, Eli Lilly, Galderma, Janssen, Leo‐Pharma, Novartis, Pfizer, Sanofi‐Genzyme, UCB Pharma. J. Seneschal is investigator or speaker or member of advisory board for Abbvie, Eli Lilly, Galderma, Janssen, Leo‐Pharma, Novartis, Pfizer, Sanofi‐Genzyme. J. Thyssen is advisor, speaker or investigator for Abbvie, Arena, Pfizer, LEO Pharma, Regeneron, Sanofi‐Genzyme, Almirall, and Eli Lilly. He has received research grants from Regeneron and Sanofi‐Genzyme. C. Vestergaard is Speaker/honorarium for Sanofi, Leo Pharma, Abbvie, Pfizer, Pierre Fabre, AstraZeneca. No other disclosures were reported. Publisher Copyright: © 2022 The Authors. Journal of the European Academy of Dermatology and Venereology published by John Wiley & Sons Ltd on behalf of European Academy of Dermatology and Venereology.

PY - 2023/1/1

Y1 - 2023/1/1

N2 - Background: The TREatment of ATopic eczema (TREAT) Registry Taskforce is a collaborative international network of registries collecting data of atopic eczema (AE) patients receiving systemic and phototherapy with the common goal to provide long-term real-world data on the effectiveness, safety and cost-effectiveness of therapies. A core dataset, consisting of domains and domain items with corresponding measurement instruments, has been developed to harmonize data collection. Objectives: We aimed to give an overview of the status and characteristics of the eight established TREAT registries, and to perform a mapping exercise to examine the degree of overlap and pooling ability between the national registry datasets. This will allow us to determine which research questions can be answered in the future by pooling data. Methods: All eight registries were asked to share their dataset and information on the current status and characteristics. The overlap between the core dataset and each registry dataset was identified (according to the domains, domain items and measurement instruments of the TREAT core dataset). Results and conclusions: A total of 4702 participants have been recruited in the eight registries as of 1st of May 2022. Of the 69 core dataset domain items, data pooling was possible for 69 domain item outcomes in TREAT NL (the Netherlands), 61 items in A-STAR (UK and Ireland), 38 items in TREATgermany (Germany), 36 items in FIRST (France), 33 items in AtopyReg (Italy), 29 items in Biobadatop (Spain), 28 items in SCRATCH (Denmark) and 20 items in SwedAD (Sweden). Pooled analyses across all registries can be performed on multiple important domain items, covering the main aims of analysing data on the (cost-)effectiveness and safety of AE therapies. These results will facilitate future comparative or joint analyses.

AB - Background: The TREatment of ATopic eczema (TREAT) Registry Taskforce is a collaborative international network of registries collecting data of atopic eczema (AE) patients receiving systemic and phototherapy with the common goal to provide long-term real-world data on the effectiveness, safety and cost-effectiveness of therapies. A core dataset, consisting of domains and domain items with corresponding measurement instruments, has been developed to harmonize data collection. Objectives: We aimed to give an overview of the status and characteristics of the eight established TREAT registries, and to perform a mapping exercise to examine the degree of overlap and pooling ability between the national registry datasets. This will allow us to determine which research questions can be answered in the future by pooling data. Methods: All eight registries were asked to share their dataset and information on the current status and characteristics. The overlap between the core dataset and each registry dataset was identified (according to the domains, domain items and measurement instruments of the TREAT core dataset). Results and conclusions: A total of 4702 participants have been recruited in the eight registries as of 1st of May 2022. Of the 69 core dataset domain items, data pooling was possible for 69 domain item outcomes in TREAT NL (the Netherlands), 61 items in A-STAR (UK and Ireland), 38 items in TREATgermany (Germany), 36 items in FIRST (France), 33 items in AtopyReg (Italy), 29 items in Biobadatop (Spain), 28 items in SCRATCH (Denmark) and 20 items in SwedAD (Sweden). Pooled analyses across all registries can be performed on multiple important domain items, covering the main aims of analysing data on the (cost-)effectiveness and safety of AE therapies. These results will facilitate future comparative or joint analyses.

UR - http://www.scopus.com/inward/record.url?scp=85137730125&partnerID=8YFLogxK

U2 - https://doi.org/10.1111/jdv.18566

DO - https://doi.org/10.1111/jdv.18566

M3 - Article

C2 - 36018221

SN - 0926-9959

VL - 37

SP - 123

EP - 136

JO - Journal of the European Academy of Dermatology and Venereology

JF - Journal of the European Academy of Dermatology and Venereology

IS - 1

ER -

Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce

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