1,721,226 research outputs found
Data linkage between the French multiple sclerosis cohort (OFSEP) and the French national health insurance database (SNDS)
No full textInternational audienceBackground: Linking disease registries to nationwide healthcare administrative databases increases the research opportunities. Recent guidelines emphasize the need of transparency in this process.Objective: Our aims were to describe the process of record linkage between the French multiple sclerosis (MS) cohort (OFSEP) and the national health insurance database (SNDS) and to evaluate the linkage quality.Methods: As no unique identifier was available in the two databases, the OFSEP-SNDS data linkage was performed by indirect matching using the following sixteen patient variables to create a unique key: sex, dates of birth and death, of visits to a neurologist, of MS-related hospitalizations, of MRI, and use of disease-modifying therapies. Three indicators were computed to assess the linkage quality.Results: Among the 52,034 eligible patients in the OFSEP registry, 42,603 (81.9%) were matched with patients in the SNDS database, with good overall quality (robustness=3.19; this is the number of linkage variables that can be removed without losing the uniqueness of the linked pair; 87.8% of common information). Comparison of the linked and unlinked populations revealed no major selection bias regarding age and sex distributions.Conclusion: The successful linkage of more than 40,000 patients with MS broadens the research perspectives by allowing access to a wide range of clinical and administrative data (e.g., comorbidities, care pathways) over a long mean disease duration (> 15 years)
OFSEP, a nationwide cohort of people with multiple sclerosis: Consensus minimal MRI protocol
No full textInternational audienceMultiple sclerosis (MS) is most generally considered as a severe disease with high physical and mental risks of disability. Since the end of the 1990s, several high cost long-term disease-modifying treatments provided some clinical efficiency. However, patient's follow-up was needed for the detection and the assessment of their side-effects. The “Observatoire français de la sclérose en plaques” (OFSEP) project aims to improve the clinical, biological and imaging systematic longitudinal follow-up of patients. It should increase the quality, efficiency and safety of patients’ care, with a unique opportunity of large scale, about 41,000 patients followed in 62 French centers using the European Database for Multiple Sclerosis (EDMUS) software. OFSEP is divided into three working groups (clinical, biological and imaging). The imaging working group defines standards for routine MRI follow-up in the whole cohort and contains three subgroups: acquisition, workflow, and data processing. A common and feasible brain and spinal cord acquisition protocol has been defined by the acquisition group, and accepted by the OFSEP steering and scientific committees. This protocol can be implemented in all French MRI centers. The major MRI manufacturers have agreed to provide the dedicated collection of sequences as an “OFSEP box” with every software upgrade or new MRI machine. The new OFSEP protocol will provide a unique opportunity to study a population-based collection of data from people with MS
The biological sample collection of the OFSEP French MS registry: An essential tool dedicated to researchers
No full textInternational audienceToday's medicine strives to be personalized, preventive, predictive and participatory. This implies to have access to multimodal data to better characterize patients groups and to combine clinical and imaging data with high-quality biological samples. Collecting such data is one of the objectives of the Observatoire français de la sclérose en plaques (OFSEP), the French MS registry. On December 2022, the OFSEP biocollection includes 4,888 patients with scientific characteristics and about 90,000 samples. Thanks to its richness, this biocollection open for the scientific community, contributes to address unmet needs in MS through identification of multiomics determinants of MS activity, progression and secondary effects
Going Beyond Counting First Authors in Author Co-citation Analysis
No full textThe present study examines one of the fundamental aspects of author co-citation analysis (ACA) - the way co-citation
counts are defined. Co-citation counting provides the data on which all subsequent statistical analyses and mappings
are based, and we compare ACA results based on two different types of co-citation counting - the traditional type that
only counts the first one among a cited work's authors on the one hand and a non-traditional type that takes into
account the first 5 authors of a cited work on the other hand. Results indicate that the picture produced through this non-traditional author co-citation counting contains more coherent author groups and is therefore considerably clearer. However, this picture represents fewer specialties in the research field being studied than that produced through the traditional first-author co-citation counting when the same number of top-ranked authors is selected and analyzed. Reasons for these effects are discussed
Prognostic factors of disability progression in multiple sclerosis in real life: the OFSEP-high definition (OFSEP-HD) prospective cohort in France
No full textInternational audiencePurpose: To determine prognostic factors of disability in multiple sclerosis (MS), that is, (1) identify determinants of the dynamics of disability progression; (2) study the effectiveness of disease-modifying treatments (DMTs); (3) merge determinants and DMTs for creating patient-centred prognostic tools and (4) conduct an economic analysis.Participants: Individuals registered in the French Observatoire Français de la Sclérose en Plaques (OFSEP) database were included in this OFSEP-high definition cohort if they had a diagnosis of MS, were ≥15 years old and had an Expanded Disability Status Scale (EDSS) score <7. The outcomes will be assessed annually: (1) time to reach irreversible EDSS scores of 4, 6 and 7; (2) relapses and disease progression; (3) MRI-based progression, patient-reported outcomes, social consequences; and (4) combined outcomes on activity and progression. Clinical and quality-of-life data, MRI results and biological (blood, serum) samples will be collected at each follow-up.Findings to date: A cohort of 2842 individuals, 73.4% women, mean (SD) age of 42.7 (11.6) years, median disease duration of 8.8 years, has been recruited from July 2018 to September 2020. The course of MS was relapsing remitting in 67.7%, secondary progressive in 11.9%. The mean annual relapse rate was 0.98. The disease-modifying treatment received was highly effective therapy in 50.3% and moderately effective therapy in 30.7%.Future plans: The participants will be followed until December 2026. Disease course up to four landmarks will be examined as predictors of disease progression: (1) diagnosis of MS; (2) relapse activity worsening and independent progression; (3) any recent disease activity and (4) any visit with absence of disease activity in the past 5 years. The marginal effectiveness and tolerability of treatments will be assessed. Stratified algorithms will be proposed for medical decision-making. Economic evaluation of disease cost and cost-effectiveness of new DMTs will be conducted from a public payer perspective.Trial registration number: NCT0360345
Variations on the Author
No full text“Variations on the Author” discusses two of Eduardo Coutinho’s recent films (Um Dia na Vida, from 2010, and Últimas Conversas, posthumously released in 2015) and their contribution to the general question of documentary authorship. The director’s filmography is characterized by a consistent yet self-effacing form of authorial self-inscription: Coutinho often features as an interviewer that rather than express opinions propels discourses; an interviewer that is good at listening. This mode of self-inscription characterizes him as an author who is not expressive but who is nonetheless markedly present on the screen. In Um Dia na Vida, however, Coutinho is completely absent form the image, while Últimas Conversas, on the contrary, includes a confessional prologue that moves the director from the margins to the center of his films. This article examines the ways in which these works stand out in the filmography of a director who offers new insights into the notion of cinematic authorship
Appropriate Similarity Measures for Author Cocitation Analysis
No full textWe provide a number of new insights into the methodological discussion about author cocitation analysis. We first argue that the use of the Pearson correlation for measuring the similarity between authors’ cocitation profiles is not very satisfactory. We then discuss what kind of similarity measures may be used as an alternative to the Pearson correlation. We consider three similarity measures in particular. One is the well-known cosine. The other two similarity measures have not been used before in the bibliometric literature. Finally, we show by means of an example that our findings have a high practical relevance.information science;Pearson correlation;cosine;similarity measure;author cocitation analysis
MSJ815602_Annex_1 – Supplemental material for Observatoire Français de la Sclérose en Plaques (OFSEP): A unique multimodal nationwide MS registry in France
No full textSupplemental material, MSJ815602_Annex_1 for Observatoire Français de la Sclérose en Plaques (OFSEP): A unique multimodal nationwide MS registry in France by Sandra Vukusic, Romain Casey, Fabien Rollot, Bruno Brochet, Jean Pelletier, David-Axel Laplaud, Jérôme De Sèze, François Cotton, Thibault Moreau, Bruno Stankoff, Bertrand Fontaine, Francis Guillemin, Marc Debouverie and Michel Clanet in Multiple Sclerosis Journal</p
MSJ815602_Supplementary_Data – Supplemental material for Observatoire Français de la Sclérose en Plaques (OFSEP): A unique multimodal nationwide MS registry in France
No full textSupplemental material, MSJ815602_Supplementary_Data for Observatoire Français de la Sclérose en Plaques (OFSEP): A unique multimodal nationwide MS registry in France by Sandra Vukusic, Romain Casey, Fabien Rollot, Bruno Brochet, Jean Pelletier, David-Axel Laplaud, Jérôme De Sèze, François Cotton, Thibault Moreau, Bruno Stankoff, Bertrand Fontaine, Francis Guillemin, Marc Debouverie and Michel Clanet in Multiple Sclerosis Journal</p
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