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- Flachenecker, P, et al.
(författare)
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Multiple sclerosis registries in Europe - results of a systematic survey
- 2014
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Ingår i: Multiple sclerosis (Houndmills, Basingstoke, England). - : SAGE Publications. - 1477-0970 .- 1352-4585. ; 20:11, s. 1523-1532
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Tidskriftsartikel (refereegranskat)abstract
- Identification of MS registries and databases that are currently in use in Europe as well as a detailed knowledge of their content and structure is important in order to facilitate comprehensive analysis and comparison of data. Methods: National MS registries or databases were identified by literature search, from the results of the MS Barometer 2011 and by asking 33 national MS societies. A standardized questionnaire was developed and sent to the registries’ leaders, followed by telephone interviews with them. Results: Twenty registries were identified, with 13 completing the questionnaire and seven being interviewed by telephone. These registries differed widely for objectives, structure, collected data, and for patients and centres included. Despite this heterogeneity, common objectives of the registries were epidemiology ( n=10), long-term therapy outcome ( n=8), healthcare research ( n=9) and support/basis for clinical trials ( n=8). While physician-based outcome measures (EDSS) are used in all registries, data from patients’ perspectives were only collected in six registries. Conclusions: The detailed information on a large number of national MS registries in Europe is a prerequisite to facilitating harmonized integration of existing data from MS registries and databases, as well as comprehensive analyses and comparison across European populations.
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- Montalban, X, et al.
(författare)
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ECTRIMS/EAN Guideline on the pharmacological treatment of people with multiple sclerosis
- 2018
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Ingår i: Multiple sclerosis (Houndmills, Basingstoke, England). - : SAGE Publications. - 1477-0970 .- 1352-4585. ; 24:2, s. 96-120
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Tidskriftsartikel (refereegranskat)abstract
- Multiple sclerosis (MS) is a complex disease with new drugs becoming available in the past years. There is a need for a reference tool compiling current data to aid professionals in treatment decisions. Objectives: To develop an evidence-based clinical practice guideline for the pharmacological treatment of people with MS. Methods: This guideline has been developed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology and following the updated EAN recommendations. Clinical questions were formulated in Patients–Intervention–Comparator–Outcome (PICO) format and outcomes were prioritized. The quality of evidence was rated into four categories according to the risk of bias. The recommendations with assigned strength (strong and weak) were formulated based on the quality of evidence and the risk-benefit balance. Consensus between the panelists was reached by use of the modified nominal group technique. Results: A total of 10 questions were agreed, encompassing treatment efficacy, response criteria, strategies to address suboptimal response and safety concerns and treatment strategies in MS and pregnancy. The guideline takes into account all disease-modifying drugs approved by the European Medicine Agency (EMA) at the time of publication. A total of 21 recommendations were agreed by the guideline working group after three rounds of consensus. Conclusion: The present guideline will enable homogeneity of treatment decisions across Europe.
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- Ellenberger, D, et al.
(författare)
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Comparison of employment among people with Multiple Sclerosis across Europe
- 2022
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Ingår i: Multiple sclerosis journal - experimental, translational and clinical. - : SAGE Publications. - 2055-2173. ; 8:2, s. 20552173221090653-
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Tidskriftsartikel (refereegranskat)abstract
- People with Multiple Sclerosis (PwMS) suffer from an increased risk of unemployment during the course of the disease. In recent years progress has been made in increasing the time until patients have to leave the workforce permanently. Such a retirement is often associated with MS but the driving factors including disability progression, support measures at the workplace, and societal aspects are not yet fully understood. Methods We consolidated data from four European MS databases from Germany, Poland, Sweden, and the United Kingdom, which were able to provide data on working status, disability progression and quality of life in accordance with the data harmonization framework of the EUReMS (European Registry in Multiple Sclerosis) project. Results Factors strongly associated with unemployment are disability progression, low quality of life and being close to the statutory retirement age. Overall, highest employment rate (77%) and lowest effects of gender and disease duration were found in Sweden. Conclusions We found remarkable differences between the European registers and the countries studied, which may indicate inequalities at European level. Furthermore, our findings suggest that it is feasible and useful to combine data from different MS registers in Europe, albeit the data structures are heterogeneous.
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