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Opportunities and challenges for real-world studies on chronic inflammatory joint diseases through data enrichment and collaboration between national registers: the Nordic example

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Harvard

Chatzidionysiou, K, Hetland, ML, Frisell, T, Di Giuseppe, D, Hellgren, K, Glintborg, B, Nordström, D, Aaltonen, K, Törmänen, MR, Klami Kristianslund, E, Kvien, TK, Provan, SA, Björn Guðbjörnsson, B, Dreyer, L, Kristensen, LE, Jørgensen, TS, Jacobsson, L & Askling, J 2018, 'Opportunities and challenges for real-world studies on chronic inflammatory joint diseases through data enrichment and collaboration between national registers: the Nordic example' RMD Open, vol. 4, no. 1, pp. e000655. https://doi.org/10.1136/rmdopen-2018-000655

APA

CBE

Chatzidionysiou K, Hetland ML, Frisell T, Di Giuseppe D, Hellgren K, Glintborg B, Nordström D, Aaltonen K, Törmänen MR, Klami Kristianslund E, Kvien TK, Provan SA, Björn Guðbjörnsson B, Dreyer L, Kristensen LE, Jørgensen TS, Jacobsson L, Askling J. 2018. Opportunities and challenges for real-world studies on chronic inflammatory joint diseases through data enrichment and collaboration between national registers: the Nordic example. RMD Open. 4(1):e000655. https://doi.org/10.1136/rmdopen-2018-000655

MLA

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Author

Chatzidionysiou, Katerina ; Hetland, Merete Lund ; Frisell, Thomas ; Di Giuseppe, Daniela ; Hellgren, Karin ; Glintborg, Bente ; Nordström, Dan ; Aaltonen, Kalle ; Törmänen, Minna Rk ; Klami Kristianslund, Eirik ; Kvien, Tore K ; Provan, Sella A ; Björn Guðbjörnsson, Bjorn ; Dreyer, Lene ; Kristensen, Lars Erik ; Jørgensen, Tanja Schjødt ; Jacobsson, Lennart ; Askling, Johan. / Opportunities and challenges for real-world studies on chronic inflammatory joint diseases through data enrichment and collaboration between national registers : the Nordic example. In: RMD Open. 2018 ; Vol. 4, No. 1. pp. e000655.

Bibtex

@article{cedea67f958f49d195942868e2d9e02b,
title = "Opportunities and challenges for real-world studies on chronic inflammatory joint diseases through data enrichment and collaboration between national registers: the Nordic example",
abstract = "There are increasing needs for detailed real-world data on rheumatic diseases and their treatments. Clinical register data are essential sources of information that can be enriched through linkage to additional data sources such as national health data registers. Detailed analyses call for international collaborative observational research to increase the number of patients and the statistical power. Such linkages and collaborations come with legal, logistic and methodological challenges. In collaboration between registers of inflammatory arthritides in Sweden, Denmark, Norway, Finland and Iceland, we plan to enrich, harmonise and standardise individual data repositories to investigate analytical approaches to multisource data, to assess the viability of different logistical approaches to data protection and sharing and to perform collaborative studies on treatment effectiveness, safety and health-economic outcomes. This narrative review summarises the needs and potentials and the challenges that remain to be overcome in order to enable large-scale international collaborative research based on clinical and other types of data.",
author = "Katerina Chatzidionysiou and Hetland, {Merete Lund} and Thomas Frisell and {Di Giuseppe}, Daniela and Karin Hellgren and Bente Glintborg and Dan Nordstr{\"o}m and Kalle Aaltonen and T{\"o}rm{\"a}nen, {Minna Rk} and {Klami Kristianslund}, Eirik and Kvien, {Tore K} and Provan, {Sella A} and {Bj{\"o}rn Gu{\dh}bj{\"o}rnsson}, Bjorn and Lene Dreyer and Kristensen, {Lars Erik} and J{\o}rgensen, {Tanja Schj{\o}dt} and Lennart Jacobsson and Johan Askling",
note = "COPECARE",
year = "2018",
doi = "10.1136/rmdopen-2018-000655",
language = "English",
volume = "4",
pages = "e000655",
journal = "RMD Open",
issn = "2056-5933",
publisher = "BMJ Publishing Group",
number = "1",

}

RIS

TY - JOUR

T1 - Opportunities and challenges for real-world studies on chronic inflammatory joint diseases through data enrichment and collaboration between national registers

T2 - the Nordic example

AU - Chatzidionysiou, Katerina

AU - Hetland, Merete Lund

AU - Frisell, Thomas

AU - Di Giuseppe, Daniela

AU - Hellgren, Karin

AU - Glintborg, Bente

AU - Nordström, Dan

AU - Aaltonen, Kalle

AU - Törmänen, Minna Rk

AU - Klami Kristianslund, Eirik

AU - Kvien, Tore K

AU - Provan, Sella A

AU - Björn Guðbjörnsson, Bjorn

AU - Dreyer, Lene

AU - Kristensen, Lars Erik

AU - Jørgensen, Tanja Schjødt

AU - Jacobsson, Lennart

AU - Askling, Johan

N1 - COPECARE

PY - 2018

Y1 - 2018

N2 - There are increasing needs for detailed real-world data on rheumatic diseases and their treatments. Clinical register data are essential sources of information that can be enriched through linkage to additional data sources such as national health data registers. Detailed analyses call for international collaborative observational research to increase the number of patients and the statistical power. Such linkages and collaborations come with legal, logistic and methodological challenges. In collaboration between registers of inflammatory arthritides in Sweden, Denmark, Norway, Finland and Iceland, we plan to enrich, harmonise and standardise individual data repositories to investigate analytical approaches to multisource data, to assess the viability of different logistical approaches to data protection and sharing and to perform collaborative studies on treatment effectiveness, safety and health-economic outcomes. This narrative review summarises the needs and potentials and the challenges that remain to be overcome in order to enable large-scale international collaborative research based on clinical and other types of data.

AB - There are increasing needs for detailed real-world data on rheumatic diseases and their treatments. Clinical register data are essential sources of information that can be enriched through linkage to additional data sources such as national health data registers. Detailed analyses call for international collaborative observational research to increase the number of patients and the statistical power. Such linkages and collaborations come with legal, logistic and methodological challenges. In collaboration between registers of inflammatory arthritides in Sweden, Denmark, Norway, Finland and Iceland, we plan to enrich, harmonise and standardise individual data repositories to investigate analytical approaches to multisource data, to assess the viability of different logistical approaches to data protection and sharing and to perform collaborative studies on treatment effectiveness, safety and health-economic outcomes. This narrative review summarises the needs and potentials and the challenges that remain to be overcome in order to enable large-scale international collaborative research based on clinical and other types of data.

U2 - 10.1136/rmdopen-2018-000655

DO - 10.1136/rmdopen-2018-000655

M3 - Review

VL - 4

SP - e000655

JO - RMD Open

JF - RMD Open

SN - 2056-5933

IS - 1

ER -

ID: 54747967