The Norwegian Multiple Sclerosis Registry and Biobank

Km, Myhr; Grytten, Nina; Aarseth, Jan Harald

doi:10.1111/ane.12030

Cited by 25 publications

(26 citation statements)

References 31 publications

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“…In the UK, for example, a national biobank was established to collect half a million blood samples with information [9]. Attempts to establish biobanks for MS have been reported in both Norway [10] and Sweden [11]. Both biobanks have participated in collaborative research and generated data deemed beneficial.…”

Section: Introductionmentioning

confidence: 99%

Towards establishing a multiple sclerosis biobank in Jordan

Ahram¹,

Zaza²,

Ibayyan³

et al. 2014

International Journal of Neuroscience

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Genome-wide association studies (GWAS) have been a promising approach in unraveling genetic associations to multiple sclerosis (MS), a complex, multifactorial disease. Biobanks are repositories of patient biospecimens and information that can promote GWAS research. However, the success of GWAS and biobanking is dependent on the level of participation of MS patients in genetic research. In order to initiate MS-based biobanking and GWAS research in Jordan, the willingness of MS patients to participate in long-term, genetic research in Jordan and their preferred type of a consent form were investigated. MS patients (289) were recruited for genetic studies. Personal and clinical information were collected from those who enrolled in the study. Approximately 96% of MS patients agreed to participate in genetic studies. The female:male ratio among patients was 2:1 with most patients being diagnosed with relapsing-remitting MS (88%). The mean age of onset was 28.3 years, the mean duration of illness was 6 years, and the mean Expanded Disability Status Scale was 2.8. Relatedness of parents was significantly associated with having secondary-progressive MS. Approximately 85% of the patients preferred open consent with 37% of them preferring to renew their consent. All the patients approved to be recontacted and update their information via accessing their medical files or physicians. These observations support the establishment of a specialized MS biobank in Jordan and pave the way to participate in international large-scale genetic initiatives.

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Section: Introductionmentioning

confidence: 99%

Towards establishing a multiple sclerosis biobank in Jordan

Ahram¹,

Zaza²,

Ibayyan³

et al. 2014

International Journal of Neuroscience

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“…Among responders, the majority responded to the first mail sent (range 70-90%), while the remainder responded only after the second mail was sent. During the same time that case recruitment was underway in Norway, the Norwegian MS Registry and Biobank [34,35] was updated and was queried a second time to determine if any additional cases were eligible for participation. This second round of case recruitment took place in 2011 and had a response rate of 77% (150/195) of whom 80% responded to the first mailing.…”

Section: Resultsmentioning

confidence: 99%

The EnvIMS Study: Design and Methodology of an International Case-Control Study of Environmental Risk Factors in Multiple Sclerosis

Magalhaes¹,

Pugliatti²,

Casetta³

et al. 2015

Neuroepidemiology

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Background: Multiple sclerosis (MS) is a chronic disease of the central nervous system, often resulting in significant neurological disability. The causes of MS are not known; however, the incidence of MS is increasing, thereby suggesting that changes in lifestyle and/or environmental factors may be responsible. On this background, the Environmental Risk Factors in MS Study or EnvIMS study was designed to further explore the etiology of MS. The design and methodology are described, providing details to enable investigators to (i) use our experiences to design their own studies; (ii) take advantage of, and build on the methodological work completed for, the EnvIMS study; (iii) become aware of this data source that is available for use by the research community. Methods: EnvIMS is a multinational case-control study, enrolling 2,800 cases with MS and 5,012 population-based controls in Canada, Italy, Norway, Serbia and Sweden. The study was designed to investigate the most commonly implicated risk factors for MS etiology using a self-report questionnaire. Results/Conclusions: The use of a common methodology to study MS etiology across several countries enhances the comparability of results in different geographic regions and research settings, reduces the resources required for study design and enhances the opportunity for data harmonization.

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“…25 The contribution of community health services to management of MS-related symptoms seems to be inadequate for a number of patients. 26 An increasing number of effective disease A majority of these patients probably needs lifelong assessment to avoid substandard symptomatic treatment.…”

Section: Discussionmentioning

confidence: 99%

“…10 Registries with systematic recording of symptomatic therapy can be helpful in assessing initiation and safety of such treatment. 26 An increasing number of effective disease modifying medications is now available in MS. Given the current shift of MS care to help the mobile MS patient stay healthy with advanced treatment, there is a need to support older people with MS and their need for care to improve their quality of life.…”

Section: Discussionmentioning

confidence: 99%