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A Nordic Rheumatology Register Pilot
to facilitate collaborative studies based on linkages
of clinical data with national ...
Societal challenges
Chronic inflammatory diseases
 Life-time risk of 1 in 20 for rheumatoid arthritis (RA) and
spondylart...
Challenges for clinical research
Observational studies
 Size and clinical phenotype call for collaborative efforts
Clinic...
Opportunities on the Nordic level
 Similar health care and treatment strategies for patients
with chronic inflammatory di...
The aim
To pilot three infrastructure approaches to enable
collaborative studies, on the Nordic level, based on the
combin...
The project
 Phase I assemble register-based Rheumatology research
infrastructures in each of the Nordic countries, throu...
The project
The project
SRQ DANBIO NORDMARD ROB-FIN ICEBIO
The project
The project
The project
The project
The project
The partners
Country Lead Institution
Sweden Sofia Ernestam Karolinska Institutet
Denmark Lars-Erik Kristensen Univ of Cop...
The partners
Country Lead Institution
Sweden Sofia Ernestam Karolinska Institutet
Denmark Lars-Erik Kristensen Univ of Cop...
Impact
A Nordic research infrastructure based on register-
linkages and IT solutions for collaborative analyses:
ground-br...
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A Nordic Rheumatology Register Pilot to facilitate collaborative studies based on linkages of clinical data with national health-and socio-economy registers

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Johan Askling

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A Nordic Rheumatology Register Pilot to facilitate collaborative studies based on linkages of clinical data with national health-and socio-economy registers

  1. 1. A Nordic Rheumatology Register Pilot to facilitate collaborative studies based on linkages of clinical data with national health- and socio- economy registers Johan Askling Karolinska Institutet Stockholm, Sweden
  2. 2. Societal challenges Chronic inflammatory diseases  Life-time risk of 1 in 20 for rheumatoid arthritis (RA) and spondylarthritis (SpA) including ankylosing spondylitis (AS) and psoriatic arthritis (PsoA)  Dramatically changed treatment paradigm, “biological” drugs  Response?  Safety?  Long-term effectiveness?  Costs?
  3. 3. Challenges for clinical research Observational studies  Size and clinical phenotype call for collaborative efforts Clinical trials  Registry-based enriched pragmatic trials (R-RCTs) to replace impossible standard-type RCTs Logistics  Current modus operandi: copying datasets, physical data migration, and one-off solutions  The framework for register-based research on the national levels limit prospects for collaborative studies at the Nordic level
  4. 4. Opportunities on the Nordic level  Similar health care and treatment strategies for patients with chronic inflammatory diseases  Nordic Rheumatology at the forefront in population- based longitudinal clinical patient registers  Collaboration between the applicants, including the ongoing pragmatic NORD-STAR trial  Nordic setting: similar health registers, existence of national registers on societal outcomes, possibility to link information together
  5. 5. The aim To pilot three infrastructure approaches to enable collaborative studies, on the Nordic level, based on the combination of existing socio-economic and health registers in the Nordic countries with clinical Rheumatology registers, and trial data
  6. 6. The project  Phase I assemble register-based Rheumatology research infrastructures in each of the Nordic countries, through linkages of clinical and other registers  Phase II pilot different technical and analytical approaches to make the resultant data linkages available for joint analyses on a Nordic level  Phase III use of the resultant Nordic platform to address issues in an enriched pragmatic RA trial, and observational studies in RA and in SpA.  Phase IV identify and address hurdles and bottlenecks
  7. 7. The project
  8. 8. The project SRQ DANBIO NORDMARD ROB-FIN ICEBIO
  9. 9. The project
  10. 10. The project
  11. 11. The project
  12. 12. The project
  13. 13. The project
  14. 14. The partners Country Lead Institution Sweden Sofia Ernestam Karolinska Institutet Denmark Lars-Erik Kristensen Univ of Copenhagen Norway Karin Fagerli University of Oslo Finland Dan Nordström University of Helsinki Iceland Björn Gudbjörnsson University of Iceland
  15. 15. The partners Country Lead Institution Sweden Sofia Ernestam Karolinska Institutet Denmark Lars-Erik Kristensen Univ of Copenhagen Norway Karin Fagerli University of Oslo Finland Dan Nordström University of Helsinki Iceland Björn Gudbjörnsson University of Iceland NORD-STAR SpA RA Sweden Denmark Norway Finland Iceland
  16. 16. Impact A Nordic research infrastructure based on register- linkages and IT solutions for collaborative analyses: ground-breaking research and Nordic competitiveness in sectors of medical research in which the Nordic countries have traditionally had a strong position but in which new development is needed in order to remain in lead: clinical trials, post- marketing safety studies, and in outcomes research

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