Home
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

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

Safety and efficacy of rituximab in multiple sclerosis – a norwegian observational study

The objective of this project is to investigate the safety and efficacy of off-label treatment with rituximab in multiple sclerosis (MS).  The study is a retrospective uncontrolled observational study. It has a multicenter design and involves all patients treated with rituximab for multiple sclerosis at Haukeland University hospital and cooperating neurological departments (Stavanger University Hospital, Haugesund Hospital, Førde Hospital and Akershus University Hospital) from 2008-2019. Patients are identified through the Norwegian MS-register. Outcome data are collected from the MS-register and medical journal. Baseline data, effect data and adverse events are recorded. Adverse events are registered according to the Common Terminology Criteria for adverse events.The time frame for this project is June 2018-June 2021.

Please contact: Hilde Marie Torgauten 

Phone: +47 480 96 328
E-mail: hilde.marie.torgauten@helse-bergen.no

Norwegian real world experience from the clinical use of teriflunomide and dimethyl fumarate in the treatment of multiple sclerosis.

Teriflunomide and dimethyl fumarate are two new treatment options for MS that have some advantage over older treatment options, such as higher efficacy and increased compliance. The objective of this study is to determine whether there exists a significant difference in either risk of discontinuation of treatment or rate of adverse events between teriflunomide and dimethyl fumarate. We identified 420 patients who had received either teriflunomide or dimethyl fumarate at Haukeland University Hospital from November 2013 to February 2018.  Through the Norwegian MS-registry and patients journals we have uncovered variables such as duration of disease, age, gender, clinical and radiological activity of the disease and duration of treatment with either teriflunomide or dimethyl fumarate. Through statistical analysis, we aim to uncover which of the two treatments that offers the most stable conditions for the patients.

Time frame: 2018 – 2019.

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.