Literature DB >> 19300969

National MS registries.

Peter Flachenecker1, Kristin Stuke.   

Abstract

This review gives an overview of national registries that are currently in use for patients with multiple sclerosis (MS). The large-scale registries described herein include the Danish MS Registry, the Norwegian MS Registry, the Swedish MS Registry, the Italian MS Database Network, the North-American NARCOMS Registry, and the German MS Registry. These MS registries are extremely helpful for studying disease characteristics in large populations and monitoring the long-term outcome of disease-modifying therapies. Furthermore, an almost complete ascertainment of cases provides information on the provision of treatments, services and supplies within a given area that may be used to compare different levels of health care within and between these regions. In the long-term, MS registries monitor the health care situation of MS patients over time including the implementation of guidelines relating to care and treatment, measure the improvements that have taken place, and reveal shortages and/or misalignment in health care services. The information gathered herein is not only useful for the long-term follow-up of the individual patient, but also for society as a whole by increasing understanding of and knowledge about MS and allowing national authorities and relevant parties to make informed and relevant decisions about MS.

Entities:  

Mesh:

Year:  2008        PMID: 19300969     DOI: 10.1007/s00415-008-6019-5

Source DB:  PubMed          Journal:  J Neurol        ISSN: 0340-5354            Impact factor:   4.849


  21 in total

Review 1.  Randomized controlled trials to assess therapies for multiple sclerosis.

Authors:  Dean M Wingerchuk; John H Noseworthy
Journal:  Neurology       Date:  2002-04-23       Impact factor: 9.910

2.  [MS registry in Germany--design and first results of the pilot phase].

Authors:  P Flachenecker; U K Zettl; U Götze; J Haas; S Schimrigk; W Elias; M Pette; M Eulitz; M Hennig; J Bertram; R Hollweck; A Neiss; M Daumer; D Pitschnau-Michel; P Rieckmann
Journal:  Nervenarzt       Date:  2005-08       Impact factor: 1.214

3.  The Norwegian Multiple Sclerosis National Competence Centre and National Multiple Sclerosis registry -- a resource for clinical practice and research.

Authors:  K-M Myhr; N Grytten; J H Aarseth; H Nyland
Journal:  Acta Neurol Scand Suppl       Date:  2006

4.  Optic neuritis as onset manifestation of multiple sclerosis: a nationwide, long-term survey.

Authors:  T L Sørensen; J L Frederiksen; H Brønnum-Hansen; H C Petersen
Journal:  Neurology       Date:  1999-08-11       Impact factor: 9.910

5.  Treatment patterns of multiple sclerosis patients: a comparison of veterans and non-veterans using the NARCOMS registry.

Authors:  Albert C Lo; Olympia Hadjimichael; Timothy L Vollmer
Journal:  Mult Scler       Date:  2005-02       Impact factor: 6.312

6.  Fatal accidents among Danes with multiple sclerosis.

Authors:  Henrik Brønnum-Hansen; Thomas Hansen; Nils Koch-Henriksen; Egon Stenager
Journal:  Mult Scler       Date:  2006-06       Impact factor: 6.312

7.  MSBase: an international, online registry and platform for collaborative outcomes research in multiple sclerosis.

Authors:  H Butzkueven; J Chapman; E Cristiano; F Grand'Maison; M Hoffmann; G Izquierdo; D Jolley; L Kappos; T Leist; D Pöhlau; V Rivera; M Trojano; F Verheul; J P Malkowski
Journal:  Mult Scler       Date:  2006-12       Impact factor: 6.312

8.  The Italian Multiple Sclerosis Database Network (MSDN): the risk of worsening according to IFNbeta exposure in multiple sclerosis.

Authors:  Maria Trojano; Pierluigi Russo; Aurora Fuiani; Damiano Paolicelli; Elisabetta Di Monte; Enrico Granieri; Giulio Rosati; Giovanni Savettieri; Giancarlo Comi; Paolo Livrea
Journal:  Mult Scler       Date:  2006-10       Impact factor: 6.312

9.  Multiple sclerosis registry in Germany: results of the extension phase 2005/2006.

Authors:  Peter Flachenecker; Kristin Stuke; Wolfgang Elias; Matthias Freidel; Judith Haas; Dorothea Pitschnau-Michel; Sebastian Schimrigk; Uwe K Zettl; Peter Rieckmann
Journal:  Dtsch Arztebl Int       Date:  2008-02-15       Impact factor: 5.594

10.  Reliability and validity of two self-report measures of impairment and disability for MS. North American Research Consortium on Multiple Sclerosis Outcomes Study Group.

Authors:  C E Schwartz; T Vollmer; H Lee
Journal:  Neurology       Date:  1999-01-01       Impact factor: 9.910

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  22 in total

1.  Meeting the needs of people with primary progressive multiple sclerosis, their families, and the health-care community.

Authors:  Nancy J Holland; Diana M Schneider; Robert Rapp; Rosalind C Kalb
Journal:  Int J MS Care       Date:  2011

Review 2.  Development and pilot phase of a European MS register.

Authors:  Peter Flachenecker; Laura Khil; Sverrir Bergmann; Mariusz Kowalewski; Ion Pascu; Francisco Pérez-Miralles; Jaume Sastre-Garriga; Thomas Zwingers
Journal:  J Neurol       Date:  2010-05-05       Impact factor: 4.849

3.  Evolving expectations around early management of multiple sclerosis.

Authors:  Ralf Gold; Jerry S Wolinsky; Maria Pia Amato; Giancarlo Comi
Journal:  Ther Adv Neurol Disord       Date:  2010-11       Impact factor: 6.570

Review 4.  Evidence for the efficacy and effectiveness of THC-CBD oromucosal spray in symptom management of patients with spasticity due to multiple sclerosis.

Authors:  Uwe K Zettl; Paulus Rommer; Petra Hipp; Robert Patejdl
Journal:  Ther Adv Neurol Disord       Date:  2016-01       Impact factor: 6.570

5.  Telemedicine for Monitoring MS Activity and Progression.

Authors:  Nuria Sola-Valls; Yolanda Blanco; Maria Sepúlveda; Eugenia Martinez-Hernandez; Albert Saiz
Journal:  Curr Treat Options Neurol       Date:  2015-11       Impact factor: 3.598

Review 6.  Neuromuscular adverse effects associated with systemic retinoid dermatotherapy: monitoring and treatment algorithm for clinicians.

Authors:  Elisabeth Chroni; Alexandra Monastirli; Dionysios Tsambaos
Journal:  Drug Saf       Date:  2010-01-01       Impact factor: 5.606

7.  Transplantation of human adipose-derived stem cells enhances remyelination in lysolecithin-induced focal demyelination of rat spinal cord.

Authors:  Nazem Ghasemi; Shahnaz Razavi; Mohammad Mardani; Ebrahim Esfandiari; Hossein Salehi; Sayyed Hamid Zarkesh Esfahani
Journal:  Mol Biotechnol       Date:  2014-05       Impact factor: 2.695

8.  Targeted inhibition of complement using complement receptor 2-conjugated inhibitors attenuates EAE.

Authors:  Xianzhen Hu; Stephen Tomlinson; Scott R Barnum
Journal:  Neurosci Lett       Date:  2012-10-16       Impact factor: 3.046

9.  Symptomatology of MS: results from the German MS Registry.

Authors:  Kristin Stuke; Peter Flachenecker; Uwe K Zettl; Wolfgang G Elias; Matthias Freidel; Judith Haas; Dorothea Pitschnau-Michel; Sebastian Schimrigk; Peter Rieckmann
Journal:  J Neurol       Date:  2009-07-23       Impact factor: 4.849

10.  Therapeutic inhibition of the alternative complement pathway attenuates chronic EAE.

Authors:  Xianzhen Hu; V Michael Holers; Joshua M Thurman; Trent R Schoeb; Theresa N Ramos; Scott R Barnum
Journal:  Mol Immunol       Date:  2013-01-20       Impact factor: 4.407

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