1,720,968 research outputs found
Assessment of the patient's perspective in the European Register for Multiple Sclerosis (EUReMS): study protocol of the PRO study
No full textAssessment of the patient's perspective in the European Register for Multiple Sclerosis (EUReMS): study protocol of the PRO study
No full textEntwicklung eines gemeinsamen modularen Datensatzes für die Studien des KKNMS und der DMSG
No full text
Changing requirements and resulting needs for IT-infrastructure for longitudinal research in the neurosciences
No full textThe observation of growing "difficulties" in IT-infrastructures in neuroscience research during the last years led to a search for reasons and an analysis on how this phenomenon is reflected in the scientific literature. With a retrospective analysis of nine examples of multicenter research projects in the neurosciences and a literature review the observation was systematically analyzed. Results show that the rise in complexity mainly stems from two reasons: (1) more and more need for information on quality and context of research data (metadata) and (2) long-term requirements to handle the consent and identity/pseudonyms of study participants and biomaterials in relation to legal requirements. The combination of these two aspects together with very long study times and data evaluation periods are components of the subjectively perceived "difficulties". A direct consequence of this result is that big multicenter trials are becoming part of integrated research data environments and are not standing alone for themselves anymore. This drives up the resource needs regarding the IT-infrastructure in neuroscience research. In contrast to these findings, literature on this development is scarce and the problem probably underestimated. (C) 2014 Elsevier Ireland Ltd and the Japan Neuroscience Society. All rights reserved
Entwicklung eines gemeinsamen modularen Datensatzes für die Studien des KKNMS und der DMSG
No full textThe German MS Register: update on immunotherapy
No full textMerck Serono; Biogen Idec; Bayer; Genzyme; Novartis; TEVA Sanof
Patients characteristics influencing the longitudinal utilization of steroids in multiple sclerosis – an observational study
No full textBackgroundMultiple Sclerosis is the most common disease in young adults affecting the central nervous system. Disease may progress with acute attacks (relapsing MS) or continuously (progressive MS). Glucocorticosteroids are used in the treatment of acute attacks. The aim of this study was to analyse characteristics of patients with MS, and their influence on current treatment patterns of relapses with glucocorticosteroids. DesignIn 2001, the German National MS Society initiated the German MS-Registry. Patients with relapsing MS were included (n=5106) from this registry. Logistic regression models were used to detect trends over time. The likelihood of administration of steroids is modelled in dependence of calendar year and in dependence to confounders in treatment conditions. The sample size allows that odds ratios can be detected with a power of 90% (alpha=005). ResultsAdministration of glucocorticosteroids was influenced by EDSS (P<00001), age (P<00001) and disease duration (P<00001). Therapy administration in an outpatient setting was more likely in patients with higher EDSS (P<00001) and longer disease duration (P<00001). The utilization of glucocorticosteroids increased with higher EDSS for all relapsing patients. Interestingly, all overutilization of glucocorticosteroids decreased over time and was accompanied by a steadily increased administration of emergent therapeutics. Although there are about 70% of registered patients with relapsing MS on immune-modulatory treatment, almost 60% of them received glucocorticosteroids for treatment of relapses. ConclusionsTreatment patterns with glucocorticosteroids in patients with MS are influenced mainly by EDSS and disease duration. The decline in the utilization of glucocorticosteroids is accompanied by an increase in natalizumab treatment.Teva Pharmaceutical
Interoperability Working Group: core dataset and information systems for data integration and data exchange in the Medical Informatics Initiative
No full textZusammenfassung Die Arbeitsgruppe Interoperabilität der Medizininformatik-Initiative (MII) ist die Plattform für die Abstimmung übergreifender Vorgehensweisen, Datenstrukturen und Schnittstellen zwischen den Datenintegrationszentren (DIZ) der Universitätskliniken und nationalen bzw. internationalen Interoperabilitätsgremien. Ziel ist die gemeinsame inhaltliche und technische Ausgestaltung einer über das Forschungsdatenportal für Gesundheit nutzbaren verteilten Infrastruktur zur Sekundärnutzung klinischer Versorgungsdaten. Wichtige Rahmenbedingungen sind dabei Datenschutz und IT-Sicherheit für die Nutzung von Gesundheitsdaten in der biomedizinischen Forschung. Hierfür werden in dezidierten Taskforces geeignete Methoden eingesetzt, um prozessuale, syntaktische und semantische Interoperabilität für Datennutzungsprojekte zu ermöglichen. So wurde der MII-Kerndatensatz, bestehend aus mehreren Modulen mit zugehörigen Informationsmodellen, entwickelt und mittels des Standards HL7® FHIR® implementiert, um fachliche und technische Vorgaben für die interoperable Datenbereitstellung von Versorgungsdaten durch die DIZ zu ermöglichen. Zur näheren Beschreibung dieser Datensätze dienen internationale Terminologien und konsentierte Metadaten. Die Gesamtarchitektur, einschließlich übergreifender Schnittstellen, setzt die methodischen und rechtlichen Anforderungen an eine verteilte Datennutzungsinfrastruktur z. B. durch Bereitstellung pseudonymisierter Daten oder föderierte Analysen um. Mit diesen Ergebnissen der Arbeitsgruppe Interoperabilität stellt die MII eine zukunftsweisende Lösung für den Austausch und die Nutzung von Routinedaten vor, deren Anwendbarkeit über den Zweck der Forschung hinausgeht und eine wesentliche Rolle in der digitalen Transformation des Gesundheitswesens spielen kann.Abstract The interoperability Working Group of the Medical Informatics Initiative (MII) is the platform for the coordination of overarching procedures, data structures, and interfaces between the data integration centers (DIC) of the university hospitals and national and international interoperability committees. The goal is the joint content-related and technical design of a distributed infrastructure for the secondary use of healthcare data that can be used via the Research Data Portal for Health. Important general conditions are data privacy and IT security for the use of health data in biomedical research. To this end, suitable methods are used in dedicated task forces to enable procedural, syntactic, and semantic interoperability for data use projects. The MII core dataset was developed as several modules with corresponding information models and implemented using the HL7® FHIR® standard to enable content-related and technical specifications for the interoperable provision of healthcare data through the DIC. International terminologies and consented metadata are used to describe these data in more detail. The overall architecture, including overarching interfaces, implements the methodological and legal requirements for a distributed data use infrastructure, for example, by providing pseudonymized data or by federated analyses. With these results of the Interoperability Working Group, the MII is presenting a future-oriented solution for the exchange and use of healthcare data, the applicability of which goes beyond the purpose of research and can play an essential role in the digital transformation of the healthcare system
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