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

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 c...

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Autores principales: Bosma, Angela L., Musters, Annelie H., Bloem, Manja, Gerbens, Louise A. A., Middelkamp‐Hup, Maritza A., Haufe, Eva, Schmitt, Jochen, Barbarot, Sebastien, Seneschal, Julien, Staumont‐Sallé, Delphine, Johansson, Emma K., Bradley, Maria, von Kobyletzki, Laura B., Vittrup, Ida, Frier Ruge, Iben, Thyssen, Jacob P., Vestergaard, Christian, de Vega, Marina, García‐Doval, Ignacio, Chiricozzi, Andrea, Stingeni, Luca, Calzavara‐Pinton, Piergiacomo, Ardern‐Jones, Michael R., Reynolds, Nick J., Flohr, Carsten, Spuls, Phyllis I.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10087854/
https://www.ncbi.nlm.nih.gov/pubmed/36018221
http://dx.doi.org/10.1111/jdv.18566
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author Bosma, Angela L.
Musters, Annelie H.
Bloem, Manja
Gerbens, Louise A. A.
Middelkamp‐Hup, Maritza A.
Haufe, Eva
Schmitt, Jochen
Barbarot, Sebastien
Seneschal, Julien
Staumont‐Sallé, Delphine
Johansson, Emma K.
Bradley, Maria
von Kobyletzki, Laura B.
Vittrup, Ida
Frier Ruge, Iben
Thyssen, Jacob P.
Vestergaard, Christian
de Vega, Marina
García‐Doval, Ignacio
Chiricozzi, Andrea
Stingeni, Luca
Calzavara‐Pinton, Piergiacomo
Ardern‐Jones, Michael R.
Reynolds, Nick J.
Flohr, Carsten
Spuls, Phyllis I.
author_facet Bosma, Angela L.
Musters, Annelie H.
Bloem, Manja
Gerbens, Louise A. A.
Middelkamp‐Hup, Maritza A.
Haufe, Eva
Schmitt, Jochen
Barbarot, Sebastien
Seneschal, Julien
Staumont‐Sallé, Delphine
Johansson, Emma K.
Bradley, Maria
von Kobyletzki, Laura B.
Vittrup, Ida
Frier Ruge, Iben
Thyssen, Jacob P.
Vestergaard, Christian
de Vega, Marina
García‐Doval, Ignacio
Chiricozzi, Andrea
Stingeni, Luca
Calzavara‐Pinton, Piergiacomo
Ardern‐Jones, Michael R.
Reynolds, Nick J.
Flohr, Carsten
Spuls, Phyllis I.
author_sort Bosma, Angela L.
collection PubMed
description 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.
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spelling pubmed-100878542023-04-12 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 Gerbens, Louise A. A. Middelkamp‐Hup, Maritza A. Haufe, Eva Schmitt, Jochen Barbarot, Sebastien Seneschal, Julien Staumont‐Sallé, Delphine Johansson, Emma K. Bradley, Maria von Kobyletzki, Laura B. Vittrup, Ida Frier Ruge, Iben Thyssen, Jacob P. Vestergaard, Christian de Vega, Marina García‐Doval, Ignacio Chiricozzi, Andrea Stingeni, Luca Calzavara‐Pinton, Piergiacomo Ardern‐Jones, Michael R. Reynolds, Nick J. Flohr, Carsten Spuls, Phyllis I. J Eur Acad Dermatol Venereol Original Articles and Short Reports 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. John Wiley and Sons Inc. 2022-09-10 2023-01 /pmc/articles/PMC10087854/ /pubmed/36018221 http://dx.doi.org/10.1111/jdv.18566 Text en © 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. https://creativecommons.org/licenses/by-nc/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc/4.0/ (https://creativecommons.org/licenses/by-nc/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited and is not used for commercial purposes.
spellingShingle Original Articles and Short Reports
Bosma, Angela L.
Musters, Annelie H.
Bloem, Manja
Gerbens, Louise A. A.
Middelkamp‐Hup, Maritza A.
Haufe, Eva
Schmitt, Jochen
Barbarot, Sebastien
Seneschal, Julien
Staumont‐Sallé, Delphine
Johansson, Emma K.
Bradley, Maria
von Kobyletzki, Laura B.
Vittrup, Ida
Frier Ruge, Iben
Thyssen, Jacob P.
Vestergaard, Christian
de Vega, Marina
García‐Doval, Ignacio
Chiricozzi, Andrea
Stingeni, Luca
Calzavara‐Pinton, Piergiacomo
Ardern‐Jones, Michael R.
Reynolds, Nick J.
Flohr, Carsten
Spuls, Phyllis I.
Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce
title Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce
title_full Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce
title_fullStr Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce
title_full_unstemmed Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce
title_short Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce
title_sort mapping exercise and status update of eight established registries within the treatment of atopic eczema registry taskforce
topic Original Articles and Short Reports
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10087854/
https://www.ncbi.nlm.nih.gov/pubmed/36018221
http://dx.doi.org/10.1111/jdv.18566
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