WHITE BOOK 2TASK FORCE

Torben Sigsgaard

For the FERS meeting Brussels April 2009

COPD in Europe

Preparatory group

Torben Sigsgaard Chair A6

Nikos Siafakas President elect

Peter Helms Advocacy Committee

Ben Nemery Scientific Committee

Jean-Luc Eiselé Lausanne Office

Content

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

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

Health economy

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

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.

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 Nat’l committees

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 No DataData

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

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

April to July

IARC will provide data on: Respiratory cancers

WHO and the assembly on infectons will provide data on: Respiratory infections Tuberculosis

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

XX

Second best

CiCityty

RegionRegion

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