The European MS Online Database for Patients and Researchers

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The European MS Online Database for Patients and
Researchers

• Jan Hillert
• Karolinska Institute
• Department of Clinical Neuroscience

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Inflammation Neurodegeneration
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The MS problem
The Multiple Sclerosis Problem

• Common 1/500
• Increasing
• A disaster for Quality of life
• Expensive for society

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Patient 1, Emil 25 yrs

• First attack of MS 2001
• Diagnosis 2002
• On interferon beta 2002
• Breakthrough disease more attacks
• August 2006 walks with crutches, memory and
  concentration problems

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Patient 1, Emil 25 yrs
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Patient 2, Ronja, 22 yrs

• Family history Mother has MS
• June 2006 vertigo
• July 2006 numbness in feet
• Aug 2006 weakness of right side
• Magnetic resonance imaging
• gt100 lesions

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Patient 2, Ronja, 22 yrs
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The MS problem
The Multiple Sclerosis Opportunity

• Increasing awareness
• Better diagnostics
• Scientific progress
• New and better treatments

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A vision for Multiple sclerosis 2010-2020

• Early diagnosis
• Early intervention
• From Chronic disease state
• To Early prevention of progression
• From Rehabilitation
• To Equal opportunities

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Obstacle - we lack control

• Who are our patients?
• How are they?
• What services do they get?
• What is the benefit of their care?

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Highly warranted MS registries

• Who are our patients?
• How are they?
• What services do they get?
• What is the benefit of their care?

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Why now?

• Technological advances
• Economic crisis and health care
• Many new drugs coming up need to be
• Implemented in a structured way
• Followed-up for efficacy and safety
• EMSP momentum
• Neurologist momentum

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We propose a European On-line MS Registry

• Minmal information
• Disability
• Quality of life
• Treatment
• Volountary
• Rewarding to user
• Patient participation

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An exampleThe Swedish MS Registry
Since 2001 Now gt 10,000 75 of MS patients in
Sweden
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(No Transcript)
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Frequency of immunomodulatory treatment per
county among RR patients with less than 15 years
of treatment duration
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The European On-line MS Registry

• A Scenario
• Centralized data collection of data from
• National or Regional centers
• Data from
• A standardized on-line software, and/or
• Established registries

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The European On-line MS Registry

• Organizational aspects
• Legal aspects
• Ethical aspects
• Technical aspects (minor)

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European On-line MS Registry

• 2010
• Define parameters
• First collection of data
• 2011
• On-line registry 1st new country running
• 2012-15
• Annual reports

• 2010
• Organization draft
• First joint analysis
• 2011
• Legal and Ethics committee
• Research board
• 2012-15 gt10 countries

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We propose a European On-line MS Registry

• Minimal information
• Disability
• Quality of life
• Treatment
• Voluntary
• Rewarding to user
• Patient participation

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The European On-line MS Registry

• We need
• Political awareness
• Financial support
• Regulatory demands

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Patient 2, Ronja, 22 yrs

• June 2006 vertigo
• July 2006 numbness in feet
• Aug 2006 weakness of right side
• MRI gt100 T2 lesions
• Sep 2006 Put on Tysabri
• Feb 2007 Fully recovered
• Jan 2008 No attacks, starting university
• Sep 2009 No attacks, symptom free

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The European On-line MS Registry

• We will
• Assure European MS health care quality
• Assure that new treatments are
• Introduced in a structured way
• Evaluated long term
• Create a European cutting edge opportunity for
  clinical research