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

Mapping exercise and status update of eight established registries within the TREatment of ATopic eczema Registry Taskforce
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 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.
0926-9959
123-136
Bosma, Angela L.
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Musters, Annelie H.
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Bloem, Manja
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Gerbens, Louise A.A.
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Middelkamp-Hup, Maritza A.
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Haufe, Eva
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Schmitt, Jochen
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Barbarot, Sebastien
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Seneschal, Julien
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Staumont-Salle, Delphine
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Johansson, Emma K.
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Bradley, Maria
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von Kobyletzki, Laura B.
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Vittrup, Ida
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Ruge, Iben Frier
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Thyssen, Jacob P.
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Vestergaard, Christian
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de Vega, Marina
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Garcia-Doval, Ignacio
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Chiricozzi, Andrea
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Stingeni, Luca
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Calzavara-Pinton, Piergiacomo
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Ardern-Jones, Michael R.
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Reynolds, Nick J.
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Flohr, Carsten
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Spuls, Phyllis, I
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Bosma, Angela L.
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Musters, Annelie H.
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Bloem, Manja
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Gerbens, Louise A.A.
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Middelkamp-Hup, Maritza A.
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Haufe, Eva
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Schmitt, Jochen
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Barbarot, Sebastien
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Seneschal, Julien
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Staumont-Salle, Delphine
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Bradley, Maria
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von Kobyletzki, Laura B.
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Ruge, Iben Frier
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Thyssen, Jacob P.
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Vestergaard, Christian
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de Vega, Marina
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Garcia-Doval, Ignacio
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Chiricozzi, Andrea
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Stingeni, Luca
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Calzavara-Pinton, Piergiacomo
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Ardern-Jones, Michael R.
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Reynolds, Nick J.
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Flohr, Carsten
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Spuls, Phyllis, I
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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-Salle, Delphine, Johansson, Emma K., Bradley, Maria, von Kobyletzki, Laura B., Vittrup, Ida, Ruge, Iben Frier, Thyssen, Jacob P., Vestergaard, Christian, de Vega, Marina, Garcia-Doval, Ignacio, Chiricozzi, Andrea, Stingeni, Luca, Calzavara-Pinton, Piergiacomo, Ardern-Jones, Michael R., Reynolds, Nick J., Flohr, Carsten and Spuls, Phyllis, I (2022) 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. (doi:10.1111/jdv.18566).

Record type: Article

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.

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Accepted/In Press date: 8 August 2022
e-pub ahead of print date: 10 September 2022

Identifiers

Local EPrints ID: 471355
URI: http://eprints.soton.ac.uk/id/eprint/471355
ISSN: 0926-9959
PURE UUID: 69bd0f7c-ec0a-4d3b-947b-1da62fc68976
ORCID for Michael R. Ardern-Jones: ORCID iD orcid.org/0000-0003-1466-2016

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Date deposited: 03 Nov 2022 18:00
Last modified: 07 Jan 2023 02:42

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Contributors

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

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