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WHITE BOOK TASK FORCE

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WHITE BOOK 2
TASK FORCE
Torben Sigsgaard
For the FERS meeting
Brussels April 2009
COPD in Europe
Preparatory group
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Torben Sigsgaard
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Chair A6
Nikos Siafakas
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Peter Helms
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President elect
Ben Nemery
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Advocacy Committee
Scientific Committee
Jean-Luc EiselГ©
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Lausanne Office
Content
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Epidemiology
Clinical picture of the diseases
Health Economy
Education and Training
Advocacy part.
Future directions
Epidemiology
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Assembly 6 epidemiology and occupational health will:
пЃ¬ 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.
пЃ¬ 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.
пЃ¬ 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.
пЃ¬ Arrange the above meeting with the Lausanne office
Health economy
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We are aiming at a sensitivity analysis
including best knowledge from a Western
European and a former Eastern European
country
Advocacy I
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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:
пЃ¬ Burden of lung disease
пЃ¬ Health economic impact
пЃ¬ Clinical and research
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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.
Publishing
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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 Nat’l
committees
RECRUITMENT OF THE
PEOPLE TO DO THE WORK
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An open invitation to members
from European Contries
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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
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
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April to July
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Identify one person from each country
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Who can provide data on:
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Asthma in childhood
Asthma in adults
Chronic obstructive pulmonary disease
Interstitial lung diseases
Sleep breathing disorders
Cystic fibrosis
Acute respiratory failure
Pediatric respiratory disease
April to July
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IARC will provide data on:
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Respiratory cancers
WHO and the assembly on infectons will
provide data on:
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Respiratory infections
Tuberculosis
From each country we need
National Data
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Prevalence or
incidence
Stratfied for
gender and age
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All listed diseases
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Asthma in childhood
Asthma in adults
Chronic obstructive
pulmonary disease
Interstitial lung diseases
Sleep breathing disorders
Cystic fibrosis
Acute respiratory failure
Pediatric respiratory
disease
X
Second best
CiRegion
ty
Procedure
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Identification of public
healt specialist in
each country
Registration at ERSoffice
Instructions arrive
from ERS
Data are reported
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Data judged by:
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Completeness
Quality
Relevance
If of adequate quality
and quantity
The specialist will be
invited to an
epidemiological
workshop in July
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