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Norwegian Multiple Sclerosis Competence Centre and Research Group

Registry Based Research

Ansatte i Norsk MS-register og biobank
The Norwegian MS-Registry and Biobank group. From the left: Jan Harald Aarseth, Tori Smedal, Stig Wergeland and Anne-Britt Skår
Photo:
Ingvild Festervoll Melien for UiB

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Background and vision

The register based research aims to complement randomized controlled trials (RCT) on treatement of multiple sclerosis. The advantage of registry-based studies is to show the effect, discontinuation rate and side effects of different treatment options in a real world setting. This is especially important in settings where it is impossible to conduct RCTs, or in order to idenitfy new indications for already existing medications. Registry studies are also very important in epidemiological and health service quality research. 

Ongoing projects

Repurposing of drugs for neurological diseases (including MS)

 

Time frame: 2018 - 2023

Please contact: Trond Riise
E-mail: Trond.riise@uib.no

Nordic quantitative and qualitative study of persistence with Tecfidera among patients with MS

In multiple sclerosis (MS), non-persistence to prescribed disease modifying treatment is associated with a higher relapse rate, health care expenses, disease burden, and lower quality of life compared to patients with high adherence. Major variances between discontinuation rates of Tecfidera treated MS patients in different MS clinics have been demonstrated. This study aim to clarify differences between clinics located either in Denmark or in Norway with an epidemiological (quantitative) method and furthermore investigate reasons for discontinuation with a qualitative observational perspective and structured interviews. We aim to identify good clinical management and create recommendations that maintain high adherence and drug persistence.

Time frame: 2019 - 2022

Cooperation with: Tobias Sejbæk, MD, Clinical Associate Professor and PhD (Hospital of South West Jutland, Denmark)

Please contact: Hilde Norborg
E-mail: hilde.norborg@uib.no

 

About the Norwegian MS-registry and biobank

The Norwegian MS-registry and biobank has two main goals:

  • to ensure quality of health care given to Norwegian MS-patients, focusing on diagnostics and treatment
  • to establish registry data and biobank materials for reasearch with the aim of mapping causes and mechanisms of disease, and to optimalize treatment and health care given to the patients. 

The MS-registry in Norway was founded in 2001, and i 2005 it was expanded to include biobank materials. By 31.12.2017 there was 7453 persons with MS included in the registry. Available information from the registry includes demografic variables, time of debut and diagnosis, results from diagnostic workup, disease activity, MRI-results, functions scores, attacks, treatments, side effects and more. 

For further information, visit The MS-registry`s homepage or find (Norwegian) reports on the The National Service Centre for Quality Registries homepages.