RT Journal Article
SR Electronic
T1 Opportunities and challenges for real-world studies on chronic inflammatory joint diseases through data enrichment and collaboration between national registers: the Nordic example
JF RMD Open
JO RMD Open
FD EULAR
SP e000655
DO 10.1136/rmdopen-2018-000655
VO 4
IS 1
A1 Katerina Chatzidionysiou
A1 Merete Lund Hetland
A1 Thomas Frisell
A1 Daniela Di Giuseppe
A1 Karin Hellgren
A1 Bente Glintborg
A1 Dan Nordström
A1 Kalle Aaltonen
A1 Minna RK Törmänen
A1 Eirik Klami Kristianslund
A1 Tore K Kvien
A1 Sella A Provan
A1 Bjorn Guðbjörnsson
A1 Lene Dreyer
A1 Lars Erik Kristensen
A1 Tanja Schjødt Jørgensen
A1 Lennart Jacobsson
A1 Johan Askling
YR 2018
UL http://rmdopen.bmj.com/content/4/1/e000655.abstract
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.