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Making Connections

Unique MS patient database now widely available

Lawry Centre for MS Research (SLCMSR) logoSince 2001, the Sylvia Lawry Centre for MS Research has been building the world’s largest database of patient information with 20,000+ patients and 81,000+ patient years. This comprises virtually all the MS patients who participated in the placebo arms of the major clinical trials conducted over the past 20 years.

By applying to the Sylvia Lawry Centre, and on signature of a Provision of Data Agreement, authorised researchers worldwide are now able to access this database. For more information, please click here.

 

MSIF News

Summaries of new MSIF activities, events, projects, programmes, resources, publications and more.
New! Genetics edition of MS in focus now available

The English-language edition of MS in focus, Genetics and hereditary aspects of MS, is now available to download. This 8th edition of the magazine features articles from the world's most renowned MS genetic scientists, who provide a complete picture of what we know about MS and genetics and what the future holds in this field.

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1,000 and counting - Atlas of MS

More than 1,000 people in 65 countries around the world have already logged onto and run 3,400 data queries on MSIF's new Atlas of MS website, launched on August 14.

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People with MS News

Summaries of news, views and achievements from people with MS around the world.
MS Youth Exchange, Slovakia 2006

source: Romanian MS Society

Between 21-28th of July 2006, an MS Youth Exchange took place in Presov, Slovakia, with participants from Hungary, Poland, Romania and the host country – Slovakia. All the participants were young people affected by MS, i.e. young people with MS (some of them were just diagnosed) and young people that had a family member with MS. The following is a report by Adrian Feurdean, coordinator of the Romanian team at the exchange.

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Yasmine Rwanyindo - profile of the month August 2006

Profile of the Month : January 2008

Yasmine Rwanyindo

Country: Rwanda
Age: 38
Year of diagnosis: August 2003
Occupation: Administrative and financial manager for a project

English Spanish Italian Russian French German

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Research News

Summaries of all the latest research findings on MS selected by a team based at the Institute of Neurology, London.
How to detect cognitive dysfunction at early stages of multiple sclerosis?

The authors assessed a self-report questionnaire on cognitive complaints and individual neuropsychological tests to select patients with early relapsing-remitting MS who needed comprehensive cognitive testing. This study showed that Symbol Digit Modalities Test may help to select patients for testing with a more complete cognitive battery.

authors: Deloire MS, Bonnet MC, Salort E, Arimone Y, Boudineau M, Petry KG, Brochet B.

source: Mult Scler. 2006 Aug;12(4):445-52.

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Sleep and fatigue in multiple sclerosis

This study describes the frequency and pattern of sleep disturbance in a group of outpatients with MS, and investigates the relationship between sleep disturbance and fatigue. Sleep disturbance is common in MS and is associated with treatable symptoms, including pain and nocturia. Sleep disturbance may be an important factor contributing to fatigue in patients with MS.

authors: Stanton BR, Barnes F, Silber E.

source: Mult Scler. 2006 Aug;12(4):481-6

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The six spot step test: a new measurement for walking ability in multiple sclerosis

This study describes a quantitative test to assess ambulation in MS: the Six Spot Step Test (SSST), which besides speed includes co-ordination and balance. The SSST seems to be superior to the timed 25-foot walk (T25FW), which is currently being used, in terms of dynamic range, floor effect and discriminatory power. The SSST is a relevant alternative for the T25FW.

authors: Nieuwenhuis MM, Van Tongeren H, Sorensen PS, Ravnborg M.

source: Mult Scler. 2006 Aug;12(4):495-500

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A systematic review of oral methotrexate for multiple sclerosis

This paper reviews the role of oral methotrexate in MS. Two randomized controlled trials were identified. Although one of these trials reported a non-significant reduction in sustained Expanded Disability Status Scale (EDSS) progression and number of relapses, further trials are required in both relapsing-remitting and progressive groups to establish the role of oral methotrexate in MS.

authors: Gray OM, McDonnell GV, Forbes RB.

source: Mult Scler. 2006 Aug;12(4):507-10.

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Treatment with interferon beta-1b delays conversion to clinically definite and McDonald MS in patients with clinically isolated syndromes

This study demonstrates that Interferon beta-1b 250 microg subcutaneously every other day delays conversion to clinically definite multiple sclerosis, and therefore it should be considered as a therapeutic option in patients presenting with a first clinical event suggestive of multiple sclerosis.

authors: Kappos L, Polman CH, Freedman MS, Edan G, Hartung HP, Miller DH, Montalban X, Barkhof F, Bauer L, Jakobs P, Pohl C, Sandbrink R.

source: Neurology. 2006 Aug 16; [Epub ahead of print]

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Fatigue in progressive multiple sclerosis is associated with low levels of dehydroepiandrosterone

This study suggests that dehydroepiandrosterone and its sulphated conjugate should be considered as biological markers of fatigue in MS patients and that hormone replacement may thus be tested as an option to treat fatigue in MS patients.

authors: Tellez N, Comabella M, Julia E, Rio J, Tintore M, Brieva L, Nos C, Montalban X.

source: Mult Scler. 2006 Aug;12(4):487-94.

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High-dose cyclophosphamide for moderate to severe refractory multiple sclerosis

This study demonstrates that high-dose cyclophosphamide treatment in patients with severe refractory multiple sclerosis can result in disease stabilization, improved functionality, and improved quality of life. Further studies are necessary to determine the most appropriate patients for this treatment.

authors: Gladstone DE, Zamkoff KW, Krupp L, Peyster R, Sibony P, Christodoulou C, Locher E, Coyle PK.

source: Arch Neurol. 2006 Aug 14; [Epub ahead of print]

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Regional gray matter atrophy in early primary progressive multiple sclerosis: a voxel-based morphometry study

This study demonstrates that atrophy is most obvious in deep gray matter in clinically early primary progressive MS. This may reflect increased sensitivity of these regions to neurodegeneration. Cortical and infratentorial atrophy developed as the disease evolved.

authors: Sepulcre J, Sastre-Garriga J, Cercignani M, Ingle GT, Miller DH, Thompson AJ.

source: Arch Neurol. 2006 Aug;63(8):1175-80

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A rapid screening tool for fatigue impact in multiple sclerosis

This study evaluates the psychometric properties of three visual analogue scales (VAS), a rapid screening instrument for fatigue impact in multiple sclerosis. The authors conclude that the VAS for the impact of fatigue on daily life (VAS_1) is a moderately reliable, though valid and useful tool to screen rapidly for fatigue impact in multiple sclerosis.

authors: Kos D, Nagels G, D'Hooghe MB, Duportail M, Kerckhofs E.

source: BMC Neurol. 2006 Aug 17;6(1):27 [Epub ahead of print]

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MS News

Summaries of MS news from websites around the world.
From tarmac to Texas - Qantas staff ride for MS

source: MS Australia

Australian David Ralf has organised a team of Australian cyclists - all colleagues at Qantas - to fly to Texas, USA, to participate in the Valero MS 150 Bicycle Ride, October 7-8, 2006, organised by the US National MS Society's Lone Star Chapter.

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Place of residence in childhood may influence development of MS risk

source: MS Society of Canada

A study by Canadian researchers of children and adults who have MS has found that the children were more likely to have Caribbean, Asian or Middle Eastern ancestry as compared to the adults, who were of predominately Caucasian and northern-European ancestry.

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New book launched: The Young Person's Guide to MS

source: UK MS Trust

The experiences of young people living with a parent with MS form the heart of a new book launched on 17 August. The book, The Young Person's Guide to MS, has been produced by the UK MS Trust to answer the questions asked by teenagers about MS.

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Results published on early treatment with Betaseron

source: US National MS Society

Results of the “BENEFIT” study, which examined the ability of Betaseron® (interferon beta-1b, Berlex Inc.) to delay the onset of MS in people at high risk for developing the disease, have been published in the journal Neurology (Epub August 16, 2006).

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Health Canada approves Betaseron for treatment of first clinical event suggestive of MS

source: MS Society of Canada

Health Canada has approved Betaseron® (interferon beta-1b) for use in treating people who have experienced an event known as a clinically isolated syndrome (CIS) that is suggestive of multiple sclerosis.

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Multiple Sclerosis International Federation
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Email: info@msif.org

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