The Norwegian Multiple Sclerosis Registry and Biobank Myhr K-M, Grytten N, Aarseth JH. The Norwegian Multiple Sclerosis Registry and Biobank. Acta Neurol Scand: 2012: 126 (Suppl. 195): 20–23. © 2012 John Wiley & Sons A/S. Objevtives – Multiple sclerosis is a chronic inflammatory disease of the central nervous system with unknown cause and without any curable treatment. Research aiming at defining the pathogenesis of the disease is therefore needed. Methods – The Norwegian Multiple Sclerosis Registry and Biobank has been established for systematic collection of clinical and epidemiological data as well as biological samples. Data collection is based on informed consent from the individual patients and recordings by the treating neurologists. Results – All researchers have, by application, access to data and biological samples from the Norwegian Multiple Sclerosis Registry and Biobank. Conclusion – By this combined effort from both patients and health care personnel, the Registry and Biobank aims to facilitate research for improved understanding of disease mechanisms and improved health care in multiple sclerosis. K.-M. Myhr 1,2,3 , N. Grytten 2 , J. H. Aarseth 1 1 Norwegian Multiple Sclerosis Registry and Biobank, Department of Neurology, Haukeland University Hospital, Bergen, Norway; 2 Norwegian Multiple Sclerosis Competence Centre, Department of Neurology, Haukeland University Hospital, Bergen, Norway; 3 Kristian Gerhard Jebsen Centre for MS- Research, Department of Clinical Medicine, University of Bergen, Bergen, Norway Key words: Multiple Sclerosis; Registry; Biobank; quality control; diagnosis; treatment Kjell-Morten Myhr, Department of Neurology, Haukeland University Hospital, N-5020 Bergen, Norway Tel.: +47 55975045 Fax: +47 55975901 e-mail: kjmy@haukeland.no Accepted for publication September 29, 2012 Introduction Multiple sclerosis (MS) is a chronic inflammatory disease of the central nervous system caused by a complex interplay between genetic and environ- mental risk factors (1). Twice as many women as men are affected with a mean age at onset at about 30 years. Untreated MS patients develop major disabilities, meaning that half of them would expe- rience restricted walking after 10 years, and being in need of wheelchair after 25–30 years (2). MS is one of the major causes of neurological disability in young people, reduces life expectancy by 8–10 years (3), and generates high costs to the society (4). No single symptom, sign, or test provides a diag- nosis of MS that is based on disease history, clinical examination, magnetic resonance imaging (MRI) and cerebrospinal fluid (CSF) analyses (5, 6). No curable treatment is available, but relapses may be treated with glucocorticosteroids that speed up remission (7). Several immunomodulatory medica- tions are used to reduce disease activity, but all existing therapies have only partial effect, and some might cause serious complications (8). To improve health care in MS, there is a need for biomarkers for early and precise diagnosis, prognosis as well as early treatment response. Such markers may also help researchers to define the pathogenesis of the disease – and eventually contribute to the development of new treatment strategies. Biomarkers are also needed for evalua- tion of treatment effects and possible adverse events of new medications. Norwegian MS Registry and Biobank is estab- lished to improve health care in MS, to evaluate benefits and safety aspects of treatments, and facilitate research aiming at defining the cause of the disease. The Norwegian Multiple Sclerosis Registry and Biobank The Norwegian MS Registry was approved by the Regional Committee for Research Ethics and granted license from The Norwegian Data Pro- tection Authority in 1998. Enrollment, based on written informed consent from the individual patient, was initiated in 2001. The registration was performed by the local neurologist responsi- 20 Acta Neurol Scand 2012: 126 (Suppl. 195): 20–23 DOI: 10.1111/ane.12030 Ó 2012 John Wiley & Sons A/S ACTA NEUROLOGICA SCANDINAVICA