WHITE BOOK 2 TASK 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 members from 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

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 DecDec JanJan FebFeb MarMar AprApr MayMay JunJun JulJul AugAug SepSep OctOct NovNov DecDec JanJan FebFeb MarMar AprApr MayMay JunJun JulJul AugAug SepSep OctOct

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 National Data Prevalence or incidence Stratfied for gender and age All listed diseases 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 Ci ty Region

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