Guide for international research on patient quality registries in the Nordics

The overall aim with the project was to improve the conditions for: International comparisons of patient treatments and care,International research on rare diseases, Knowledge sharing in research, Quality of care, International development of drugs and devices and Patient involvement in quality registries.

This report, puts emphasis on being able to create conditions for comparisons within the Nordic countries, international and inter-professional learning to explore how learning about improvement and research, with the support of quality registries, can develop health care. This is a guide with a checklist on what to consider before starting to plan for a statistical report. 

The conclusion from this project (during 2016) is that a Nordic collaboration using quality/patient registries is possible for academic, benchmarking, observational and industry initiated studies. The practical implementation of legal frameworks for registries are currently not clear in all Nordic countries. Therefore it is important to plan well in advance and to discuss the following areas in detail: data, IT, legal and ethics. A Nordic role models exist, e.g. Nordic arthroplasty register association (NARA) and we believe that the possibilities to include Finland and Iceland in future collaborations have increased.

Contact person
Maria Nilsson - Senior Adviser
Contact person Maria Nilsson
Senior Adviser
Work +47 993 80 264
Facts about the project
Project manager

Tina Liden Mascher, Project Coordinator