WHITE BOOK 2 TASK FORCE

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WHITE BOOK 2TASK FORCE

• Torben Sigsgaard
• For the FERS meeting Brussels April 2009

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COPD in Europe
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Preparatory group

• Torben Sigsgaard
• Chair A6
• Nikos Siafakas
• President elect

• Peter Helms
• Advocacy Committee
• Ben Nemery
• Scientific Committee
• Jean-Luc Eiselé
• Lausanne Office

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Content

• Epidemiology
• Clinical picture of the diseases
• Health Economy
• Education and Training
• Advocacy part.
• Future directions

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Epidemiology

• Assembly 6 epidemiology and occupational health
  will
• Oversee the epidemiological data, and by the use
  of databases available from EU, WHO and other
  bodies update the tables and charts in the WB.
• Develop a reporting scheme and invite one person
  to contribute from each of the countries without
  existing information on the prevalence of
  respiratory diseases in Europe.
• Provide the submission of this information in an
  orderly fashion before a given deadline these
  delegates will be invited to a meeting (2 - 3
  days in a remote area with optimal conditions for
  scientific information exchange) where their
  information will be reviewed by two independent
  epidemiologists, and finally included if the
  quality is OK.
• Arrange the above meeting with the Lausanne office

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Health economy

• We are aiming at a sensitivity analysis including
  best knowledge from a Western European and a
  former Eastern European country

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Advocacy I

• The main messages from the White Book will be
  summarized in an attractive, short booklet which
  will include the main messages from the report
  including
• Burden of lung disease
• Health economic impact
• Clinical and research
• challenges and opportunities to improve lung
  health through actions at EU level.
• This summary booklet will be widely circulated
  and will be developed by a small advocacy team
  headed by the European Secretary, supported by
  the European Respiratory Society Public Relations
  Officer and Press Officer.
• Translation into the main European languages will
  be performed with proposed responsibility for
  this resting with the European Lung Foundation.

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Publishing

• The major publication will be published on-line
  and downloadable for a small fee by ERS advocacy
  committee
• A smal booklet will be produced in 4 languages to
  be distributed widely by ELF
• The booklet will be published and freely
  downloadable from the ELF homepage.
• A system should be established in order to
  facilitate translations into more languages by
  the Natl committees

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RECRUITMENT OF THE PEOPLE TO DO THE WORK

• An open invitation to membersfrom European
  Contries
• Experts from countries with good data are asked
  to deliver updated national figures on diseases
• Experts invited from No Data areas
• First priority QUALITY

No Data
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Time plan epi health economy

• 1 Establishing the group
• 2 Data gathering economy epi
• 3 Meeting for epidemiologists
• 4 Writing
• 5 Review
• 6 Final editing
• 7 Printing
• 8 Presentation

Dec Jan Feb Ma r Ap r May Jun Ju l Aug Sep Oc t Nov Dec Jan Feb Ma r Ap r May Jun Ju l Aug Sep Oc t
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April to July

• Identify one person from each country
• Who can provide data on
• Asthma in childhood
• Asthma in adults
• Chronic obstructive pulmonary disease
• Interstitial lung diseases
• Sleep breathing disorders
• Cystic fibrosis
• Acute respiratory failure
• Pediatric respiratory disease

Or as many as possible of these diseases.
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April to July

• IARC will provide data on
• Respiratory cancers
• WHO and the assembly on infectons will provide
  data on
• Respiratory infections
• Tuberculosis

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From each country we need

• Asthma in childhood
• Asthma in adults
• Chronic obstructive pulmonary disease
• Interstitial lung diseases
• Sleep breathing disorders
• Cystic fibrosis
• Acute respiratory failure
• Pediatric respiratory disease

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X
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Second best
Region
City
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Procedure

• Identification of public healt specialist in each
  country
• Registration at ERS-office
• Instructions arrive from ERS
• Data are reported

• Data judged by
• Completeness
• Quality
• Relevance
• If of adequate quality and quantity
• The specialist will be invited to an
  epidemiological workshop in July

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