Bruxelles November 2002 Quality of life Programme

MASSIMO RAGUCCI
European Commission - DG Research
Direction E - Biotechnology, Agriculture and Food
Unit 1 - Policy aspects

+32 2 2950872
 +32 2 2991860
Postal address:
European Commission
Office SDME 9/24
1049 BRUXELLES
Internet http://Biosociety.cordis.lu
ALESSIO VASSAROTTI PhD
European Commission - DG Research
Direction E - Biotechnology, Agriculture and Food
Unit 1 - Policy aspects

+32 2 2958309

+32 2 2991860
Postal address:
European Commission
Office SDME 9/29
1049 BRUXELLES
Internet http://Biosociety.cordis.lu
2

4
 QLG7-1999-00286
LIFE SCIENCES IN EUROPEAN SOCIETY.……………………………………………………..6
 QLG7-2000-01368
SUSTAINABLE EUROPEAN FARM ANIMAL
REPRODUCTION AND SELECTION (SEFABAR)……………………………………………..7
 QLG7-2001-00034
PRECAUTIONARY EXPERTISE FOR GM CROPS…………………………………………….9
 QLG7-2001-00065
OPTIMISATION OF TYPING POLICIES FOR EUROPEAN
MARROW DONORS REGISTRIES: SOCIO-ECONOMIC EVALUATION
OF MOLECULAR TECHNIQUES AND ECRUITMENT STRATEGIES………………………10
 QLG7-2001-00079
CLUSTER DEVELOPMENT AND GROWTH IN BIOTECH:
ENABLING FACTORS AND BEST PRACTICES……………………………………………….11
 QLG7-2001-01668
PUBLIC UNDERSTANDING OF GENETICS:
A CROSS-CULTURAL AND ETHNOGRAPHIC STUDY OF THE
"NEW GENETICS" AND SOCIAL IDENTITY……………………………………………………12
 QLG7-2001-01834
CONSULTATIVE INSTITUTIONS, VALUES AND
INFORMATION IN A CHANGING SOCIETY……………………………………………………13
 QLG7-2002-02475
EUROPEAN STUDY OF CLINICAL, HEALTH ECONOMIC AND
QUALITY OF LIFE OUTCOMES IN HAEMOPHILIA TRE ATMENT………………………….14
 QLG7-2002-02379
DEVELOPMENT OF A EUROPEAN NETWORK ON HEALTH ECONOMICS
EVALUATION DATABASES……………………………………………………………………...15
 QLG7-2002-02657
REPRESENTATIVE EVALUATION OF EVOLVING REMOTE
HOMEBASED PATIENT MONITORING DELIVERY………………………………………….16
……………………………………………………………………………….17
19
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The development of new technologies and their applications raises a number of important questions about impact on people, society and markets. In the frame of RTD programmes, the Commission services are mandated by the
European Council to sponsor activities aimed at studying those impacts. In particular they invite expertise on the socio-economic dimension and public attitudes to new technologies, thus contributing to the debate that is presently taking place in society.The Fifth Framework Programme (FP5) and the QoL Workprogramme as well confirms the importance of such activities and stresses that they should be in the centre of all new key actions, having to harmonize scientific progress and social expectation. In addition action line 13 under Generic Activities stresses the launching of specific analytical studies in this respect.
Action line 13 is articulated as follows:
13.1 Development of indicators and knowledge bases relevant to public policy making, covering: RTD strategies/Technology forecasting/Perceptions of new technologies;
13.2 Managing technology in society: impact of genetic information/Health technology from a societal viewpoint/Implications of new technologies for policies;
13.3 Analysis of social and economic driving forces and of new opportunities in the bioindustries, including: impacts of Life sciences and technologies on industrial and economic growth/Competitiveness and job creation/Innovation systems/Intellectual Property Rights/Availability of investment capital and human resources/Regulations.
Overall a total of only 61 proposals for socio-economic studies have been submitted under the QoL Programme in action line 13 (6 deadlines: 01.06.1999, 11.10.1999, 11.10.2000, 28.02.2001, 18.11.2001 and 31.01.2002).
There are several reasons for this mitigated response. On one hand there was the possibility to submit proposals directly to the Key Action "Improving the Socio-economic knowledge base" of the Improving Human Potential
Programme (in particular under the thematic area: "Technology, Society and Employment"). Furthermore considering the pervasiveness of Socio-economic concerns throughout the Programme there were plenty of alternative options inside the QoL. For instance studies driven towards socio-economic analysis but focused on
Public Health or Bioethical Considerations would find a more appropriate fitting under action line 10 (Public Health and Health Services Research) or action line 12 (Biomedical Ethics and Bioethics in the Context of Respect for
Fundamental Human Values). This multiplicity of entry points represent, in our view, an intrinsic quality of the programme and is well reflected by the wealth of 158 projects "with high socio-economic dimension" which have been picked as examples and are listed on pages 19-28 of this catalogue. Most of these projects (which globally represent a funding effort of about 200 million Euros – representing approximately 10% of the total QoL budget) appear to be based on the balanced integration of pure and applied science activities.
In addition, we expect that the Social science community in the Life sciences field is not yet used to working across EU borders and has not been encouraged to do so since till now; traditionally, the customers were mainly national bodies. If this is true it is obvious that the interest of researchers to the wider EU context is bound to improve in the future. To speed up this process, but also to help hard core scientists to find partners with the appropriate expertise to assemble projects coherently tuned with socio-economic expectations we have implemented in February 2000 a Biosociety web site (http://Biosociety.cordis.lu) . The users are informed on socio-economic topics linked to the new technologies in the field of Life sciences and can access various services including:

A directory of almost 400 socio-economic experts involved with the impact of new technologies;

Catalogues of funded projects (FP4 and FP5);

The most recent E.U. legislation on biotechnologies;

A Bio-glossary of more than 800 technical-scientific biotechnology related terms;

Information to proposers to help them to fully cover socio-economic aspects in R&D proposals;

A bioforum to stimulate public debates;

An automatic mailing service for the latest news.
An additional view on the limited response to the QoL calls for action line 13 comes from the anonymous experts whom we invite in Brussels to carry out the evaluation and selection of the proposals submitted.
Basically these experts feel that a much greater effort should be made to encourage proposals from the many
4

researchers throughout Europe and that this issue demands great attention! Furthermore they suspect that proposers are not always sure where to best locate their proposal. One of the 8 experts participating in the panels, at the end of the evaluation, took the time to draft a report which includes recommendations to both the
Commission and to the applicants; you can see this report on pages 17-18 of this catalogue.
At this stage 10 socio-economic studies have been launched (see details on pages 6-16).Two of the projects initiated in the year 2000, 5 started in January 2002 while remaining 3 will start at the end of this year. They are all relatively large (in average almost 10 participating institutions per project) and ambitious. Although they are also quite wide in scope they can be reconducted under the following categories:

Analysis of Public opinion and understanding (2 projects)

New developments in the Agri-food sector (2 projects)

Governance (1 project)

Development of Biotech industry (1 project)

New Health technologies (4 project)
We trust that the stimulating debate which is presently taking place and the many initiatives that have been launched will result in Community R&D activities more and more closely entangled with the growing expectations of society. In this respect socio-economic analytical studies constitute a primary ingredient for the impact evaluation of current research and the preparation of future initiatives.
Alessio Vassarotti Massimo Ragucci Etienne Magnien
Scientific Officer National Expert Head of Unit
5

Contract n. QLG7-1999-00286
Contract Type: RTD Shared cost
Starting Date: 02.01.2002
Duration: 36 months
EC contribution: 1.786.000 €
EC Scientific Officer: A. Vassarotti
Coordinator
GASKELL George
London School of Economics and Political Science
Houghton Street
WC2A 2AE London
United Kingdom
Tel: +44 20 7955 7702
Fax: +44 20 7955 7005
e-mail: g.gaskell@lse.ac.uk
Web site: http://www.lse.ac.uk/Depts/Lses
Abstract
The proposal research supports the EC's continuing monitoring of public perceptions of the life sciences through the "Eurobarometer" survey. The next survey, proposed for 1999 (henceforth EB99), designed with contributions from the present applicants, aims to preserve time series comparability and incorporates new questions covering recent developments in life sciences. The present proposal aims to provide: a report of the results of EB99, together with the time series data; a European comparative analysis of the representations of the life sciences in policy making, media coverage and public perceptions; and a series of case study analyses of key dimensions of the public debate about life sciences in the late will be disseminated in two new books, an international conference, and presentations at national and international meetings.
Keywords
Life sciences, Public perception, Media coverage
Participating Organisations
Fondation Nationale des Sciences
Politiques
PARIS-FRANCE
National Hellenic Research
Foundation
ATHENS-GREECE
University of Kuopio
KUOPIO-FINLAND
Instituto Superior de Ciencias do
Trabalho e da Empresa
LISBOA-PORTUGAL
Universitat Zurich
ZURICH-SWITZERLAND
Friedrich-Schiller-Universitat Jena
JENA-GERMANY
Roskilde University
ROSKILDE-DENMARK
Universiteit Twente
AE ENSCHEDE-NETHERLANDS
National Museum of Science and
Industry
LONDON-UNITED KINGDOM
Johannes Kepler Universitat Linz
LINZ-AUSTRIA
Institute of Bioorganic Chemistry
Polish Academy of Sciences
POZNAN-POLAND
Universita degli Studi di Siena
SIENA-ITALY
Institut fur technikfolgenabschatzung
WIEN-AUSTRIA
Eindhoven University of
Technology
EINDHOVEN-NETHERLANDS
University of Oslo
OSLO-NORWAY
Mid Sweden University
SUNDSVALL-SWEDEN
Centre for Technology Assessment in Baden-Wurttemberg
STUTTGART-GERMANY
Centre National de la
Recherche Scientifique
PARIS-FRANCE
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Contract n. QLG7-2000-01368
Contract Type: Thematic network
Starting Date: 01.12.2000
Duration: 36 months
EC contribution: 908.000
€
EC Scientific Officer: A. Vassarotti
Coordinators
NEETESON Anne-Marie, LIINAMO
Anna-Elisa
Farm Animal Industrial Platform (FAIP)
Benedendorpsweg 98
6862 WL Oosterbeek
The Netherlands
Tel: +31 26 339 15 38
Fax: +31 26 339 15 39 e-mail:
Neeteson@iaf.nl
and anna-elisa.liinamo@alg.vf.wag-ur.nl
Web site: http://www.sefabar.org
Abstract
SEFABAR is organized under the responsibility of the Farm Animal Industrial Platform (FAIP) , and guided by a
Management Group that includes representatives of the European Association for Animal Production (EAAP), the
European Aquaculture Society (EAS), the World’s Poultry Science Association (WPSA). SEFABAR will develop a network to facilitate and stimulate economically sound, society acceptable sustainable strategies of farm animal breeding and reproduction. Scientists and industry managers will explore sustainable breeding strategies for cattle, pigs, poultry and fish. Results of case studies on socio-economic aspects with regard to farm animal breeding and reproduction will be integrated into this process. The case studies consist of the visualization of the cultural differences within Europe and between Europe, USA and Asia (Wageningen University - Rural Sociology), the study of ethically and animal welfare regulatory aspects (Royal Veterinary and Agricultural University - Centre for Bioethics and Risk
Management and Akademie fuer Tierschutz), a study on the role of public opinion ( INRA - Laboratoire de la
Recherche sur la Consommation) and a study on the economic situation and world trade aspects (University of Exeter
- Agricultural Economics Unit). Society and policy makers will be informed about the results. During the project a web site will be available with actual activities and results.
Keywords
Sustainability, Breeding, Reproduction, Farm animals, Bio-ethics, Animal welfare, Public opinion, Cultural differences,
World trade
Project related web resources:
For SEFABAR project: www.sefabar.org
Patenting biotechnological inventions in the farm animal area (available from www.faip.dk/985proce.htm
)
List of Questions and Answers on patenting (available from www.faip.dk/patent.htm
)
Proceedings from a workshop on EC biodiversity projects in farm animals: from DG Research, DGAgriculture, and
DGFisheries. www.faip.dk/publication/utrechtmeet99.htm
Report on farm animal genomics in Europe, to be found at www.faip.dk/genome.zip
7

Participating Organisations
Akademie fuer Tierschutz
BONN, GERMANY
Wageningen Agricultural University
Rural Sociology
WAGENINGEN
THE NETHERLANDS
The Royal Veterinary and
Agricultural University - Centre for
Bio-ethics and Risk Assessment
FREDERIKSBERG C
DENMARK
Institut National de Recherche
Agronomique - Laboratoire de
Recherche sur la Consommation
IVRY-SUR-SEINE, FRANCE
University of Exeter
Agricultural Economics Unit
EXETER UK
Members (belonging to partner FAIP):
The Danish AI Societies
AARHUS
DENMARK
Wageningen University
WAGENINGEN
THE NETHERLANDS
Syndicat des Selectionneurs avicoles et aquacoles francais
NOUZILLY
FRANCE
IPG, Institute for Pig Genetics
BEUNINGEN
THE NETHERLANDS
British United Turkeys
CHESTER
UNITED KINGDOM
Agricultural Research Centre
JOIKIOINEN
FINLAND
UNCEIA
PARIS, FRANCE
KU Leuven Aquatic ecology/Animal
Sciences/Biological and environmental ethics
LEUVEN, BELGIUM
Royal Veterinary and Agricultural University
FREDERIKSBERG C, DENMARK
INRA Jouy en Josas
Biologie du developpement et biotechnologie
JOUY EN JOSAS, FRANCE
France Hybrides
ST JEAN DE BRAVE, FRANCE
INRA St. Pee sur Nivelle
Nutrition des poissons
SAINT PEE SUR NIVELLE, FRANCE
Hubbard-ISA
CHATEAUBOURG, FRANCE
Martin Luther University Halle-
Wittenberg
HALLE, GERMANY
Inst. Tierwissenschaft Bonn
BONN, GERMANY
Inst. Tierzucht und Tierverhalten,
Mariensee
NEUSTADT, GERMANY
Lohmann Tierzucht
CUXHAVEN, GERMANY
European Association for Animal Production
ROME
ITALY
World’s Poultry Science Association
UGHELEN
THE NETHERLANDS
Inst. Tierzucht und Tierhaltung
KIEL, GERMANY
Universität Hohenheim, FG Nutztierethologie und Kleintierzucht
STUTTGART, GERMANY
Nutreco
BOXMEER, THE NETHERLANDS
NAGREF Veterinary Research
Institute
IONIA, GREECE
Semenitaly
Saliceta S. Giuliano
MODENA, ITALY
Holland Genetics CR Delta
ARNHEM
THE NETHERLANDS
Aquagen
KYRKSAETERORA
NORWAY
Roslin Institute
ROSLIN
UNITED KINGDOM
PIC
ABINGDON
UNITED KINGDOM
Meat and Livestock Commission
MILTON KEYNES
UNITED KINGDOM
Rare breeds survival trust
KENILWORTH
UNITED KINGDOM
Consejo Superior de investigaciones científicas Instituto de Acuicultura de Torre de la Sal
CABANES (CASTELLON) SPAIN
Scottish Agricultural College
PENICUIK
UNITED KINGDOM
Ross Breeders
MIDLOTHIAN
UNITED KINGDOM
8

Contract n. QLG7-2001-00034
Contract Type: RTD Shared cost
Co-ordinator
WIELD David
Starting Date: 01.01.2002
Duration: 24 months
EC contribution: 549.000 €
EC Scientific Officer: A. Vassarotti
Open University Centre for Technology Strategy
UK - Milton Keynes MK7 6AA
Walton Hall
United Kingdom
Tel: +44 1908653672 - 1908-654782
Fax: +441908654825
Internet: http://technology.open.ac.uk/cts/bpg.htm
e-mail: D.V.Wield@open.ac.uk
Abstract
For GM crops in Europe, this project will analyse how current practices -regulatory measures, expert judgements and stakeholder roles - compare to different accounts of the precautionary principle. These practices will be studied at EU level and in 7 member states. Users of the research will be involved through an advisory panel and scenario-analysis workshops. The project will build upon and integrate earlier studies of public attitudes, risk regulation, precaution and deliberation. Using the analytical results, the project will suggest how official guidelines and expert bodies could be made more appropriate for addressing the policy problems which the EU faces.
Methods: Content analysis will facilitate analysis of comparisons and interactions among policy actors. Users of the research will be involved through an advisory panel. Special efforts will be made to identify key actors and to enrol them as informants in the study. They will be invited to participate in scenario-analysis workshops, based on plausible scenarios for future regulatory developments.
Keywords
GM crops, Precautionary principle, Risk regulation
Participating Organisations
(Prof. David Wield, Susan Carr, Les
Levidow )
Open University
Centre for Technology strategy
MILTON KEYNES
UNITED KINGDOM
(Bernhard Gill and Karin
Boschert)
Ludwig-Maximilians
Universitaet
MUENCHEN
GERMANY
(Prof. Louis Lemkow and David
Tàbara )
Universitat Autònoma de Barcelona
BELLATERRA
(CERDANYOLA DEL VALLES)
SPAIN
(Claire Marris and Pierre-Benoit
Joly) INRA-STEPE
PARIS
FRANCE
(Helge Torgersen) Austrian
Academy of Sciences
VIENNA
AUSTRIA
( Jesper Toft)
Roskilde Universitets Bibliotek
ROSKILDE
DENMARK
Schenkelaars Biotechnology
Consultancy
LEIDEN
THE NETHERLANDS
(Prof. Joyce Tait)
Univ. of Edinburgh
UNITED KINGDOM
9

Contract n. QLG7-2001-00065 Co-ordinator
Contract Type: RTD Shared cost
Starting Date: 01.02.2002
Duration: 32 months
EC contribution: 743.000 €
EC Scientific Officer: A. Vassarotti
CAMBON-THOMSEN Anne
INSERM U 558
Epidemiology and Analyses in Public Health:
Risks, Chronic Diseases and Handicaps
F - 31073 Toulouse
Allées Jules Guesde 37
France
Web site: http://www.euromado.org
Tel: +33561145959
Fax: +33562264240 e-mail: cambon@cict.fr
Abstract
Although 6 million potential donors are registered worldwide, finding a donor compatible for allogeneic stem cell graft is hard because of HLA polymorphism. MADO (MArrow DOnors) aims at evaluating optimisation of
Registries in Europe by increasing the proportion of donors with rare HLA types to reduce inequality of patients in a cost/effective way. The main concept is an evolving filter to screen potential donors at low cost before full HLA typing for the likely presence of frequent types, using new markers and techniques. Organisational scenarios will then be designed. MADO involves 9 WP over 2,5 years and 12 partners in EU countries: 4 European Registries, sociologists, economists, public health unit, immunogenetics/molecular laboratories, bioinformatics, industry. The overall expected achievement is a number of well-documented possible scenarios to help decision for organisation of coherent strategies of Registry management. Two Hungarian partners should join the project by the end 2002.
Keywords
Donor registries, Marrow graft, Typing policies
Participating Organisations
Institut National de la Santé et de la Recherche Médicale
FRANCE
Université Toulouse Le Mirail
FRANCE
Université Des Sciences Sociales de Toulouse 1
FRANCE
France Greffe de Moelle
FRANCE
The Anthony Nolan
Bone Marrow Trust
UNITED KINGDOM
Consortium National de
Recherche en Génomique;
Centre National de Genotypage
FRANCE
Stichting Europdonor Foundation
THE NETHERLANDS
Leiden University Medical Centre
THE NETHERLANDS
Italian Bone Marrow Donor
Registry
ITALY
Centre Hospitalier Universitaire de Montpellier
FRANCE
Advanced Biotechnology Centre
ITALY
International Genetic
Technologies
FRANCE
10

Contract n. QLG7-2001-00079 Co-ordinator
Contract Type: RTD Shared cost
Starting Date: 01.01.2002
Duration: 30 months
EC contribution: 1.224.000 €
EC Scientific Officer: A. Vassarotti
CHIESA Vittorio
Universi tà di Milano-Bicocca
Department of Biotechnology and Biosciences
I - 20126 Milano
Piazza della Scienza, 2
Italy
Tel: +00390264484518
Fax: +00390264483565 e-mail: vittorio.chiesa@unimib.it
Abstract
This project aims to develop a normative model to cluster approach in biotech. The geographical concentration of different actors (clusters) is a key development mechanism in biotech. On the basis of the examination of five different clusters in Europe (in different countries and at different stages of development). This project will develop a normative model tested on field for cluster development and management. This helps existing clusters face typical problems of cluster development and new cluster strart-up and growth.The project results will be presented in a workshop (for consortium participants) and in an open symposium and will be published in a book.
Keywords
Biotech start-up, Cluster approach, Normative model
Participating Organisations
Un iversità degli Studi di Milano-
Bicocca
MILANO
ITALY
Groupe ESIM
FRANCE
Associazione Impresa
Politecnico
MILANO
ITALY
Oestjysk Innovation A/S
DENMARK
ERBI-LTD
UNITED KINGDOM
11

Contract n. QLG7-2001-01668
Co-ordinator
Contract Type: RTD Shared cost
Starting Date: 01.02.2002
Duration: 36 months
EC contribution: 1.293.000 €
EC Scientific Officer: A. Vassarotti
EDWARDS Jeanette
The Victoria University of Manchester
Department of Social Anthropology
UK - Manchester M13 9PL
Roscoe Building Brunswick Street
United Kingdom
Tel: +441613997
Fax: +441613970 e-mail: Jeanette.Edwards@man.ac.uk
Web site: http://les1.man.ac.uk/sa/pug
Abstract
Recent developments in genetics have afforded a language and a means of reconceptualising the origins and nature of social identity. It is argued that European society is undergoing a process of geneticisation, whereby genetic explanation is increasingly used to define significant social identities and relationships of, for example, gender, kinship, race, sexuality and nationality. Yet we know very little empirically about the way in which different
European publics make sense of the new genetics and its implications. This project aims to investigate the way in which a range of publics, positioned differently vis a vis genetics (as experts, lay people, professionals, patients etc.) and located differently in terms of nation, understand the 'new genetics' and its social and cultural implications. A series of specific case studies will be augmented by historical analysis and grounded in national legislative frameworks.
Keywords
Public perspectives, Genetics, Social identity
Participating Organisations
The Victoria University of
Manchester
UNITED KINGDOM
Universitat de Barcelona
SPAIN
Centre national de la Recherche
Scientifique
FRANCE
Lithuanian Institute of History
LITHUANIA
University of Oslo
NORWAY
Fondazione Luigi Einaudi
ROMA
ITALY
Central European University
Budapest Foundation
BUDAPEST
HUNGARY
Universite Vincennes Saint
Denis
FRANCE
12

Contract n. QLG7-2001-01834 Co-ordinator
Contract Type: Thematic Network
Starting Date: 01.02.2002
Duration: 15 months
EC contribution: 205.000 €
EC Scientific Officer: A. Vassarotti
Web site: http://www.macaulay.ac.uk/serp/research/Civics.html
SPASH Clive
Socio-Economic Research Programme
The Macaulay Institute
Countesswells Road
UK – ABERDEEN AB15 8QH
United Kingdom
Tel: +441224498226
Fax: +441224498205 e-mail: c.spash@macaulay.ac.uk
Abstract
The CIVICS Thematic Network focuses on the use of genetically modified organisms (GMOs) in food production as a case study for integrating economic, social and environmental objectives in policy formation. The project brings together partners to synthesise methods for value mapping with deliberative and inclusive processes. The aim is to improve policy development with respect to complex and contentious issues. The overall approach will raise issues concerning differences between institutions and contexts across Europe.More specifically, CIVICS is looking for mechanisms to achieve effective communication of the uncertainty and risk inherent in the use of new technologies such as GMOs. Such innovations should meet the needs of the public both as consumers of technologically intensive goods and as citizens concerned for the well being of the environment and future generations. The CIVICS Thematic Network has the following sub-objectives:
 identification of additional partners and interested parties relevant to the CIVICS project;
 establishment of a GMO issue database covering institutions and policies across the participating countries;
 development of processes and research method(s) to implement participatory deliberative processes capable of eliciting values and attitudes and coping with cross-cultural issues; and
 preparation of a future research agenda specifying the potential for an implementation phase of CIVICS.
Keywords
GMOs, Agricultural policies, Public participation; Value conflicts
Participating Organisations
University of Sussex
Social Policy Research Unit
UNITED KINGDOM
Universidad de La Laguna
Departamento Economía
Aplicada
SPAIN
Lancaster University
Institute for Environment,
Philosophy & Public Policy
UNITED KINGDOM
Center of Technology
Assessment in Baden-
Wuerttemberg
GERMANY
Agricultural University of Norway
Department of Economics &
Social Sciences
NORWAY
Università degli Studi di Roma
"La Sapienza"
Dept.of Developmental and
Social Psychology
ITALY
INRA-STEPE
Paris FRANCE
13

Contract n. QLG7-2002-02475 Co-ordinator
Contract Type: Shared cost
Starting Date: under negotiation
Duration: 24 months
EC contribution: 1.828.840 €
EC Scientific Officer: A. Vassarotti
SCHRAMM Wolfgang
Ludwig-Maximilian-University
Dept. of Haemostaseology and Transfusion
Ziemssenstrasse, 1
80336 Munich
Germany
Tel: +49 89 51602286
Fax: +49 89 51602148 e-mail: wolfgang.schramm@medinn.med.uni-muenchen.de
Abstract
This study has been designed to evaluate the quality of Haemophilia care in Europe to describe the QoL of
European haemophiliacs and to estimate the costs needed to attain these levels of quality of life. About 2040 patients will be recruited consecutively from haemophilia comprehensive care centres from 22 countries. The study will consist of a QoL study , cost-of-illness, cost-effectiveness and cost-utility analysis to perform total costs due to haemophilia, to compare alternative treatments and to determine patients preferences. Haemophiliac patients from 4 years on will be stratified according to following characteristics: severity of haemophilia, presence of inhibitors, treatment schemes. Clinical and health economic data will be assessed at baseline and prospectively over a 6 month follow-up period. In addition the patients fill in a diary during the follow-up period.
Keywords
Haemophilia, Health economic, Quality of life
Participating Organisations
Ludwig-Maximilian-University
Dpt. of Haemostaseology and
Transfusion
Munich
GERMANY
Oxford Radcliffe Hospitals
NHS TRUST
Oxford Haemophilia Centre
Churchill Hospital
Oxford
UNITED KINGDOM
University of Milan
Dpt. of internal medicine
Haemophilia and Thrombosis
Milan
ITALY
University of Lund
Paedriatics (Barnkliniken)
University Hospital (U-MAS)
Malmoe
SWEDEN
University of Hamburg
Dpt. of Medical Psychology
University clinics, Hamburg
Eppendorf
Hamburg
GERMANY
National Medical Centre
National Haemophilia Centre
Budapest
HUNGARY
University of Milan
Centre of Pharmacoeconomics
Milan
ITALY
University of Medicine and
Pharmacy “Victor Babes”
III Paedriatic clinic
Timisoara
ROMANIA
Medical Economics Research
Group GmbH
Munich
GERMANY
14

Contract n. QLG7-2002-02379 Co-ordinator
Contract Type: Shared cost
Starting Date: under negotiation
Duration: 36 months
De POUVOURVILLE Gérard
Collèges des Economistes de la santé
7, rue de Citeaux
75012 Paris
France
EC contribution: 1.350.073 €
EC Scientific Officer: A. Vassarotti
Tel: +33 1 43 45 75 65
Fax: +33 1 43 45 75 67 e-mail: gdepouvo@kb.inserm.fr
Abstract
The objective of the project is to create a European Network on Health Economics Evaluation Databases on the model of the two existing databases (NHS EED in UK and CODECS in France) with a standardised methodology for collecting, listing, selecting and analysing published studies in Health Economics Evaluation for the European context.
The project will improve international comparisons and the accessibility to the socio-economic evaluation of health care technologies. It will also, as an additional benefit, provide a powerful educational tool and become a reference set of databases for policy making and all health economics evaluations actions in general since these are increasingly required by regulatory bodies at a national level, as well as the European Agencies, Multinational studies, etc.)
Keywords
Health economics, Databases network, Cost effectiveness
Participating Organisations
Collège des Economistes de la santé
Paris
FRANCE
University of York
NHS Centre for Reviews and
Dissemination
York
UNITED KINGDOM
Erasmus University
Dept. of Health policy and management
Rotterdam
THE NETHERLANDS
Istituto di Ricerche
Farmacologiche Mario Negri
Ranica (BG)
ITALY
Universitaet Hannover
Forschungsstelle fuer
Gesundheitsoekonomie und
Gesundheitssystemforschung
Hannover
GERMANY
Universidad de la Rioja
Dept. of Economics
Logroño
SPAIN
Stockholm Health Economics
Consulting AB
Uppsala
SWEDEN
15

Contract n. QLG7-2002-02657 Co-ordinator
Contract Type: Shared cost combined ROUDSARI Abdul
Starting Date: under negotiation
Duration: 27 months
EC contribution:
EC Scientific Officer:
1.077.585 €
A. Vassarotti
City University
Measurement and Information in Medicine, School of
Informatics
Northampton Square
EC1V 0HB
London
UNITED KINGDOM
Tel: +44 0 20 7040 8367
Fax: +44 0 20 7040 8364 e-mail: a.v.roudsari@city.ac.uk
Abstract
The project, involving with community-based, clinical monitoring, has two major objectives. The first is to develop a comprehensive understanding of all the interlinked factors impacting on the clinical effectiveness and costeffectiveness of this form of care, to allow European public healthcare organisations to develop strategies, policies and guidelines for use as it is adopted.The second is to develop and evaluate quality –of-life measures applicable alongside clinical measures obtained through remote monitoring, to achieve a full picture of the physical and emotional health of community based patients. Unlike previous work, a broad range of remote clinical monitoring applications will be considered; undertaken in a structured manner through a work programme that addresses this form of care from the perspectives of patient, healthcare professional and healthcare manager. A substantial volume of empirical data, to be derived from a number of diverse clinical sites, will drive work.
Keywords
Home monitoring, Evaluation, Handheld technology
Participating Organisations
City University
Measurement and Information in
Medicine, School of Informatics
London
UNITED KINGDOM
ESPIRITO SANTO
EVORA HOSPITAL
Evora
PORTUGAL
Transpond Ltd
Fetcham, Surrey
UNITED KINGDOM
Tartu University
Tartu
ESTONIA
Pulido Valente Hospital
Departamento de Pneumologia
Lisboa
PORTUGAL
Dartford, Swanley & Gravesham
Primary Care Trust (PCT)
Dartford
UNITED KINGDOM
City University
Health Management Group
London
UNITED KINGDOM
16

The following document has been prepared by the evaluators who have participated in the panel discussions, which took place on 4 December 2001.
1. The number of proposals for this call
The low number of proposals for such an important area of work is very worrying. Among the reasons:
 To begin, one reason is similar to that put forward below for the low quality of the proposals – the work programme is too general and does not give an adequate ‘steer’ to potential applicants. They are thus not sure what aspects they should concentrate on and may well not be willing or be authorized (by their host institutions) to devote the time needed to prepare an application.
 The DG’s advertising or marketing strategy for this type of research needs to be reconsidered. The QoL area concentrates (correctly) on scientific and technological issues, so those that are familiar with this subject area keep a look out for the call and know the deadlines. Sociologists and many others whose expertise is essential and would be eligible are not naturally inclined to dig into the depths of a science and technology call from Brussels, or to dig into the far reaches of the biosociety web-site, good though it is. Even if they did, it takes a lot of patience and hard searching to eventually discover the socio-economic call hiding at the end of all that science and technology. Having arrived there, often more by luck than judgement, they then discover a work programme that is far too general to be appealing.
 Merging the socio-economic call with the bio-ethics call is not going to solve the problem. Very different issues and approaches are called for, so this approach seems to be brushing the problem out of sight. This will degrade the bio-ethics area too. Europe desperately needs high quality research to ensure that the social dimensions of technology choice and, to a lesser extent, the economic issues are rigorously addressed.
2. The quality of proposals
The relatively low quality of proposals is very disappointing since this type of research should be of vital importance for QoL policy making and decision-makers. The depth of concern expressed by the evaluators throughout the December evaluation process cannot be overstated. Decisions about life science policy, incentives, regulations and official guidance must be informed by high quality research. A number of possible reasons were considered:
 Compared to the Key Actions and the other generic themes, the guidance for socio-economic research is far too general. For example, under 13.3.iii), research on intellectual property rights is suggested as a priority theme, but IPR is itself a wide-ranging and complex subject. Recognizing that the IPR regime and life sciences is very controversial, the call could be strengthened by stressing specific aspects, such as the implications of introducing grace periods in European IPR law. Similarly, under 13.3.iv), calling for “research on the effect of regulations on the development of Europe’s bioindustries” encourages and almost obliges applicants to attempt to investigate all possible regulatory instruments that affect all the bioindustries. The result, as we have seen, is proposals that can at best offer only very general conclusions rather than addressing specific regulations that affect specific segments of the bioindustries.
 The evaluation panel noted that the Commission has recently hosted a series of stakeholder workshops aiming to map out a strategic vision for the life sciences and biotechnology. The reports of these meetings stress particular issues that need to be explored in more detail, so it should be possible to specify the work programme much more clearly. For example, research that indicates what could be done to ensure that
European academics are better informed about IPR (a hindrance to commercialization noted in the
Commission’s report on the vision workshops).
17

 Many proposals are unrealistically ambitious. Lacking clear guidance, there may be a tendency to ‘secondguess’ the evaluation process by offering a wide-ranging study where much tighter focus is really needed.
 It was suggested that a more scientific approach to defining the work programme would create a stronger research agenda. It would be possible, for example, to systematically analyse the outputs of all the recent
QoL projects in order to identify the ‘hottest’ topics.
 It would also be valuable to rigorously ensure that the interests of all the stakeholder groups (commercial, industrial, public policy, consumer interests, environmental protection groups, etc.) get a voice during strategic review events. There is a general feeling that hard science, and industrial interests have tended to dominate compared to legal, ethical, social environmental or consumer protection interests. So the
Commission may need to adjust its consultation style (and associated resources) to make absolutely sure that these other interests are included.
 Concerning the quality of the proposals received, it was notable that many if not all were rather weak in methodological terms . Marks for ‘adequacy’ of scientific and technical quality were generally rather low. For a start, this arises partly because the applicants were not focussing adequately on clearly defined research questions and this emphasizes the earlier point about the need for a more sharply defined work programme.
 Outcomes are unclear . Results are often stated in terms of “reports”, “workshops”, etc which were often not described in terms of the content of the work (i.e. whether initial hypotheses are verified in the end or not – simply because initial hypotheses often are absent). Often these results were just described as a type of report, a report of XX pages, an event for YY people.
 Related to the previous point and probably due to the very detailed and complex procedural demands/proposal straight-jacket imposed by the Commission that everybody has to follow, too much attention is paid to the minutiae of presentation, Gantt charts and so on. Insufficient attention is paid to more critical and very real methodological aspects and content of the work. Now that many applicants are familiar with the mechanics of proposal writing, it is time to revisit guidelines about the content of the work.
 It was suggested that guidance about the use of project planning tools for research work could be of value, such as the logical planning framework/matrix tool that is widely used in many European countries. At least, applicants must be encouraged to pay greater attention to clearly stating and justifying their research question and then ensuring that their research method is appropriate and rigorous.
 Apart from general rhetoric, there is very little incisive about what the results may mean for policy making.
This is a difficult topic as it is by no means clear how research, policy and practice relate and inter-relate.
Perhaps it is also because the work programme is not specific about the gaps that policy makers need to address. However, since policy makers are often the potential users of results of action 13 research and they are specifically mentioned in the work programme, it is vital that applicants offer much more than general statements such as “we will inform policy makers, or policy makers will be invited to dissemination meetings”.
At least, it is suggested that the guidance notes should insist on an explanation or exploration of “user requirements” as an obligatory section in each proposal. This has been done in other EU research areas with similar characteristics with relative success.
 A significant proportion of the proposals we reviewed aim to explore the commercial and industrial dynamics of biotech industries. Obviously, to encourage a dynamic European economy, it is important that industry issues are well understood. A good many of the proposals are presented by researchers who are closely associated with “hard science” or commercial/industrial aspects of biotechnology. From a socio-economic point of view, most of these proposals are weak, sometimes for the methodological reasons explored above.
18

19

Number
Title
QLK1-CT-2000-00040 DISSEMINATING THE RESULTS OF EU FOOD RESEARCH PROGRAMMES TO SMALL AND
MEDIUM SIZED FOOD INDUSTRIES, HEALTH PROFESSIONALS AND CONSUMER
GROUPS THROUGH A 24-COUNTRY INTERACTIVE NETWORK SYSTEM
QLK1-CT-2000-00100 DIETARY HABITS PROFILE IN EUROPEAN COMMUNITES WITH DIFFERENT RISK OF
MYOCARDIAL INFARCTION: THE IMPACT OF MIGRATION AS A MODEL OF
GENE/ENVIRONMENT INTERACTION
QLK1-CT-2000-00266 THE ROLE OF DIETARY PHYTOESTROGENS IN THE PREVENTION OF BREAST AND
PROSTATE CANCER
QLK1-CT-2000-00431 THE PREVENTION OF OSTEOPOROSIS BY NUTRITIONAL PHYTOESTROGENS
QLK1-CT-1999-00765 NEW METHODOLOGIES FOR ASSESSING THE POTENTIAL OF UNINTENDED EFFECTS IN
GENETICALLY MODIFIED FOOD CROPS
QLK1-CT-1999-00752 OPTIMAL NUTRITION TOWARDS OSTEOPOROSIS PREVENTION: IMPACT OF DIET AND
GENE-NUTRIENT INTERACTIONS ON CALCIUM AND BONE METABOLISM
QLK1-CT-1999-00651 NEW METHODS FOR THE SAFETY TESTING OF TRANSGENIC FOOD
QLK1-CT-1999-00156 FOOD SAFETY IN EUROPE
QLK1-CT-1999-00916 THE ROLE OF SOCIAL, GENETIC AND ENVIRONMENTAL FACTORS IN HEALTHY EATING:
A MULTICENTRE ANALYSIS OF EATING DISORDERS AND OBESITY
QLK1-CT-1999-01182 EUROPEAN NETWORKS ON SAFETY OF GENETICALLY MODIFIED FOOD
QLK1-CT-1999-00010 HEALTHY AGEING: HOW CHANGES IN SENSORY PHYSIOLOGY, SENSORY
PSYCHOLOGY AND SOCIO-COGNITIVE FACTORS INFLUENCE FOOD CHOICE
20

Number Title
QLK2-CT-2001-00915 DEVELOPMENT OF STRATEGIES FOR CONTROL AND PREVENTION OF ANTIBIOTIC
RESISTANCE IN EUROPEAN HOSPITALS
QLK2-CT-2001-02248 CREUTZFELDT-JACOB DISEASE: EPIDEMIOLOGY, RISK FACTORS, DIAGNOSTIC TESTS
AND GENETICS
QLK2-CT-2000-00837 HUMAN TRANSMISSIBLE SPONGIFORM ENCEPHALOPATHIES: THE NEUROPATHOLOGY
NETWORK
QLK2-CT-2000-00630 NEW GENERATION GENETIC MARKERS AND TECHNIQUES FOR THE EPIDEMIOLOGY AND
CONTROL OF TUBERCULOSIS
QLK2-CT-2000-00809 SEA-LICE RESISTANCE TO CHEMOTHERAPEUTANTS DIAGNOSIS, MECHANISMS,
DYNAMICS AND CONTROL
QLK2-CT-2000-00150 PAEDIATRIC EUROPEAN NETWORK FOR TREATMENT AIDS
QLK2-CT-2000-01369 HUMAN PNEUMOCYSTIS CARINII INFECTION IN IMMUNOCOMPETENT HOSTS: A PUBLIC
HEALTH ISSUE IN EUROPE
QLK2-CT-2000-01431 CONCERTED ACTION ON SEROCONVERSION TO AIDS AND DEATH IN EUROPE
QLK2-CT-2000-00002 EUROPEAN COLLABORATIVE STUDY ON PREGNANT HIV-INFECTED WOMEN AND THEIR
CHILDREN
QLK2-CT-1999-40210 ESTABLISHMENT OF NOVEL TARGETS FOR RISK ASSESSMENT AND MONITORING OF
XENOGENEIC INFECTIONS IN THE COURSE OF ANIMAL TO HUMAN TRANSPLANTATION
QLK2-CT-1999-00429 IMPROVING VACCINATION IN EARLY LIFE (NEOVAC)
QLK2-CT-1999-00014 DEVELOPMENT OF AN EFFICACIOUS VACCINE AGAINST ANIMAL BRUCELLOSIS THAT IS
HARMLESS FOR HUMANS
QLK2-CT-1999-01093 A CLUSTER FOR TUBERCULOSIS VACCINE DEVELOPMENT
QLK2-CT-1999-00002 GENERIC CORONAVIRUS VACCINE VECTORS FOR PROTECTION OF FARM ANIMALS
AGAINST MUCOSAL INFECTIONS
QLK2-CT-1999-01293 A EUROPEAN MALARIA VACCINE DEVELOPMENT CONSORTIUM: EUROMALVAC 1
QLK2-CT-1999-00055 EUROPEAN (EURO) NETWORK FOR DEVELOPMENT OF NOVEL SAFE VACCINES BASED
ON NEW GENERATION AMPLICONS (AMP) AND OTHER DEFECTIVE HSV-1 DERIVED
VECTORS AS FOREIGN ANTIGEN DELIVERY SYSTEMS
QLK2-CT-1999-00228 MUCOSAL IMMUNIZATION - CLUSTER PROJECT
QLK2-CT-1999-00588 DEVELOPMENT OF THERAPEUTIC VACCINES FOR CHRONIC INFECTIONS CAUSED BY
THE HEPATITIS C VIRUS
QLK2-CT-1999-00871 EUROPEAN NETWORK FOR VACCINE EVALUATION IN PRIMATES: COMBINED VECTOR
IMMUNISATIONS FOR AIDS VACCINE DEVELOPMENT
QLK2-CT-1999-01119 BIVALENT HANTAVIRUS VACCINE FOR EUROPE: DIFFERENT APPROACHES AND
EVALUATION IN ANIMAL MODELS
QLK2-CT-1999-01215 SIV/HIV VACCINES: DETECTING EFFICACY AND EXPLAINING INEFFICACY
QLK2-CT-1999-01321 EUROPEAN VACCINE EFFORT AGAINST HIV/AIDS
21

Number Title
QLK3-CT-2001-02362 EARLY DIAGNOSIS OF ALZHEIMER'S DISEASE AND RELATED DEMENTIA
QLK3-CT-2000-00463 NEW ANTI-INFLAMMATORY NATURAL PRODUCTS FROM MEDICINAL PLANTS USING
INDUCIBLE TRANSCRIPTION FACTORS AND THEIR SIGNALLING PATHWAYS AS
MOLECULAR TARGETS
QLK3-CT-2000-00270 HUMAN CELL SYSTEMS FOR PREDICTING THE ALLERGENICITY OF GENETICALLY
ENGINEERED PROTEINS
QLK3-CT-2000-00103 OPTIMISING NUTRITIONAL QUALITY OF CROPS
QLK3-CT-2000-00785 THE DT40 CELL LINE AS A GENETIC MODEL AND A SUBSTITUTE FOR ANIMAL
RESEARCH
QLK3-CT-2000-00513 TOWARDS NEW ANTIBIOTICS
QLK3-CT-1999-00811 COMPARISON AND VALIDATION OF NOVEL PYROGEN TESTS BASED ON THE HUMAN
FEVER REACTION
QLK3-CT-1999-00702 PRECLINICAL EVALUATION OF DELIVERY SYSTEMS FOR NEUROPROTECTIVE GENE
THERAPY IN NEURODEGENERATIVE DISEASE
QLK3-CT-1999-00004 ENHANCED, INTELLIGENT PROCESSING OF FOOD AND RELATED WASTES USING
THERMOPHILIC POPULATIONS
QLK3-CT-1999-00104 IN VITRO PRODUCTION OF HIGH QUALITY MAMMALIAN OOCYTES FOR
BIOTECHNOLOGY, ASSISTED REPRODUCTIONS, BREEDING AND TOXICOLOGY-
TERATOLOGY PURPOSES
QLK3-CT-1999-00625 TISSUE ENGINEERED NERVE REPAIR DEVICES: DEVELOPMENT OF EUROPEAN
MEDICAL IMPLANTABLE DEVICES AND RESEARCH TRAINING FOCUS
QLK3-CT-1999-00672 TECHNOLOGY FOR THE PRODUCTION OF HEALTH RELATED SUBSTANCES BY MARINE
SPONGES
QLK3-CT-1999-00729 DESIGNING AND IMPROVING HEALTH AND FOOD RELATED PRODUCTION PROCESSES
USING FILAMENTOUS FUNGAL CELL FACTORIES
QLK3-CT-1999-00020 MESODERMAL STEM CELLS: FROM BASIC BIOLOGY TO DEVELOPMENT OF PRE-
CLINICAL MODELS OF TISSUE REPLACEMENT AND CELL THERAPY
QLK3-CT-1999-00875 IDENTIFICATION, LEAD GENERATION, STRUCTURAL BIOLOGY AND VALIDATION OF
TARGETS FOR CANCER THERAPY.
AN INTEGRATED METHODOLOGICAL APPROACH
QLK3-CT-1999-00380 CORD BLOOD AS AN ALLOGENIC SOURCE OF STEM CELL FOR CLINICAL USE
QLK3-CT-1999-00241 THEMATIC NETWORK AROUND CYSTIC FIBROSIS AND RELATED DISEASES
22

Number Title
QLK4-CT-2000-00073 EFFECTS OF OUTDOOR AND INDOOR AIR POLLUTION ON THE DEVELOPMENT OF
ALLERGIC DISEASE IN CHILDREN
QLK4-CT-2000-00197 ROAD TRAFFIC AND AIRCRAFT NOISE EXPOSURE AND CHILDREN'S COGNITION AND
HEALTH: EXPOSURE-EFFECT RELATIONSHIPS AND COMBINED EFFECTS
QLK4-CT-2000-00263 ENVIRONMENTAL INFLUENCES AND INFECTION AS AETIOLOGICAL AGENCIES IN
ATOPY AND ASTHMA IN YOUNG CHILDREN
QLK4-CT-2000-00293 NOISE AND INDUSTRIAL CHEMICALS: INTERACTION EFFECTS ON HEARING AND
BALANCE
QLK4-CT-2000-00792 RESPIRATORY ALLERGY AND INFLAMMATION DUE TO AMBIENT PARTICLES - A
EUROPEAN-WIDE ASSESSMENT
QLK4-CT-1999-01214 DEVELOPMENT OF ADVICE TO THE EC ON THE RISK TO HEALTH OF THE GENERAL
PUBLIC FROM THE USE OF SECURITY AND SIMILAR DEVICES EMPLOYING PULSED
ELECTROMAGNETIC FIELDS
QLK4-CT-1999-01287 NOISE POLLUTION HEALTH EFFECTS REDUCTION
QLK4-CT-1999-01391 PREVENTION OF ALLERGY-RISK FACTORS FOR SENSITISATION IN CHILDREN
RELATED TO FARMING AND ANTHROPOSOPHIC LIFE STYLE
QLK4-CT-1999-01558 FRAGRANCE CHEMICAL ALLERGY: A MAJOR ENVIRONMENTAL AND CONSUMER
HEALTH PROBLEM IN EUROPE
QLK4-CT-1999-01582 HEALTH EFFECTS OF PARTICLES FROM MOTOR ENGINE EXHAUST AND AMBIENT AIR
POLLUTION - A EUROPEAN COLLABORATIVE PROJECT
QLK4-CT-1999-01590 NEW BIO-MARKERS OF OXIDATIVE STRESS TO HUMANS: A ROLE IN DEVELOPING
NEW STRATEGIES FOR HUMAN PROTECTION AGAINST ENVIRONMENTAL (UVA)
DAMAGE TO SKIN
QLK4-CT-1999-01629 MECHANISM OF TOXICITY OF ASBESTOS SUBSTITUTE MINERAL FIBERS: NEW
APPROACHES TO HAZARD AND RISK ASSESSMENT
23

Number Title
QLK5-CT-2001-02461 SUSTAINABLE CONSERVATION OF ANIMAL GENETIC RESOURCES IN MARGINAL
RURAL AREAS: INTEGRATING MOLECULAR GENETICS, SOCIO-ECONOMICS AND
GEOSTATISTICAL APPROACHES
QLK5-CT-2001-01608 RURAL EMPLOYMENT AND AGRICULTURAL PERSPECTIVE IN THE BALKAN
APPLICANT COUNTRIES
QLK5-CT-2001-01923 THE ROLE OF SMALL AND MEDIUM-SIZED TOWNS IN RURAL DEVELOPMENT
QLK5-CT-2000-00094 URBAN PRESSURE ON RURAL AREAS: MUTATIONS AND DYNAMICS OF PERI-URBAN
RURAL PROCESSES
QLK5-CT-2000-00407 OPPORTUNITIES FOR AND BARRIERS TO TOURISM LED INTEGRATED RURAL
DEVELOPMENT IN RURAL REGIONS OF SELECTED MEMBER STATES
QLK5-CT-2000-00559 THE AGRICULTURAL, ECOLOGICAL AND SOCIO-ECONOMIC IMPORTANCE OF FREE-
RANGING LIVESTOCK REARING IN EUROPE
QLK5-CT-2000-00593
DEVELOPMENT OF ORIGIN LABBELLED PRODUCTS: HUMANITY, INNOVATION AND
SUSTAINIBILITY
QLK5-CT-2000-01031 MEDMONT - TOOLS FOR EVALUATING INVESTMENT IN MEDITERRANEAN
MOUNTAIN AREAS - AN INTEGRATED FRAMEWORK FOR SUSTAINABLE
DEVELOPMENT
QLK5-CT-1999-30783 A SPATIAL PERIPHERALITY, INNOVATION AND THE RURAL ECONOMY
QLK5-CT-1999-31211 SUPPORTING AND PROMOTING INTEGRATED TOURISM IN EUROPE'S LAGGING
RURAL REGIONS
QLK5-CT-1999-01296 EUROPEAN LIVESTOCK POLICY EVALUATION NETWORK: DEVELOPMENT OF A
LIVESTOCK POLICY DECISION SUPPORT SYSTEM
QLK5-CT-1999-01510 AN ASSESSMENT OF THE PRACTICALITIES AND ACCEPTABILITY OF A BOND SCHEME
AS PART OF COMMON AGRICULTURAL POLICY REFORM
QLK5-CT-1999-01526 STRATEGY FOR INTEGRATED DEVELOPMENT OF AGRICULTURE AND RURAL AREAS IN
CEE COUNTRIES
QLK5-CT-1999-01611 SUSTAINABLE AGRICULTURE IN CENTRAL AND EASTERN EUROPEAN COUNTRIES
24

Number Title
QLK6-CT-2001-00517 AGEING, HEALTH AND RETIREMENT IN EUROPE
QLK6-CT-2001-00128 EUROPEAN CHALLENGE FOR HEALTHY AGEING
QLK6-CT-2001-00258 EUROPEAN MALE AGEING STUDY: PREVALENCE, INCIDENCE AND GEOGRAPHICAL
DISTRIBUTION OF SYMPTOMS OF AGEING IN MEN AND THEIR ENDOCRINE, GENETIC
AND PSYCHOSOCIAL CORRELATES
QLK6-CT-2001-00334 ENABLING AUTONOMY, PARTICIPATION AND WELL-BEING IN OLD AGE: THE HOME
ENVIRONMENT AS A DETERMINANT FOR HEALTHY AGEING
QLK6-CT-2001-30168 EXTENDING QUALITY OF LIFE IN OLD AGE: THE STATE OF THE ART
QLK6-CT-2001-00280 AGEING WELL: EUROPEAN STUDY OF ADULT WELL BEING
QLK6-CT-2001-30006 HEALTH AGEING AND EDUCATION
QLK6-CT-2001-00241 THE ROLE OF DIET ON THE LONGEVITY OF ELDERLY EUROPEANS - A STUDY IN THE
CONTEXT OF THE EUROPEAN PROSPECTIVE INVESTIGATION INTO CANCER AND
NUTRITION
QLK6-CT-2001-30084 THE IMPACT OF POPULATION AGEING ON HEALTH CARE EXPENDITURE AND LONG
TERM CARE COSTS
QLK6-CT-2001-30243 LOOKING TO A POSITIVE FUTURE - QUALITY OF LIFE OF OLDER PEOPLE WITH
INTELLECTUAL DISABILITIES
QLK6-CT-2001-00360 SURVEY ON HEALTH, AGEING AND RETIREMENT IN EUROPE
QLK6-CT-2000-00159 PROSTATE DISORDERS: PROCUREMENT OF BIOMARKERS AND PHARMACEUTICALS
QLK6-CT-2000-00338 EARLY DEVELOPMENT OF OVARIAN FOLLICLES - DETERMINATION OF THE TIMING OF
MENOPAUSE
QLK6-CT-2000-40572 DEVELOPMENT OF SENSOR SYSTEMS FOR MEASURING SHEAR FORCES IN BODY
CONTACT INTERFACES
QLK6-CT-2000-00530 AGEING-RELATED MUSCLE WASTING: CAUSES, PREVENTION AND REVERSAL
QLK6-CT-2000-00664 CROSS-NATIONAL DETERMINANTS OF QUALITY OF LIFE AND HEALTH SERVICES FOR
THE ELDERLY
QLK6-CT-2000-00499 SLEEP DISORDERS IN MENOPAUSAL AND POSTMENOPAUSAL AGEING WOMEN:
PREVALENCE, BIOLOGICAL MECHANISMS ANIMAL MODELS, SOCIAL ASPECTS,
TREATMENT AND PREVENTION
QLK6-CT-1999-02161 SOCIO-ECONOMIC DETERMINANTS OF HEALTHY AGEING: FROM DESCRIPTION TO
EXPLANATION
QLK6-CT-1999-02182 OLD AGE AND AUTONOMY: THE ROLE OF SERVICE SYSTEMS AND
INTERGENERATIONAL FAMILY SOLIDARITY
QLK6-CT-1999-02236 ENHANCING OUTDOOR MOBILITY IN LATER LIFE: PERSONAL COPING, ENVIRONMENTAL
RESOURCES AND TECHNICAL SUPPORT
QLK6-CT-1999-02234 OPIOID TREATMENT OF CHRONIC PAIN AND INFLAMMATION IN THE LOCOMOTOR
SYSTEM
25

QLK6-CT-1999-02111
GENETIC AND BEHAVIOURAL RISK FACTORS FOR AGEING-RELATED CORONARY AND
CEREBROVASCULAR DISEASE IN EUROPE: A PROSPECTIVE INTERDISCIPLINARY
EUROPEAN MULTI-CENTRE STUDY
QLK6-CT-1999-02140 CONNECTIVITY IN LANGUAGE REHABILITATION IN STROKE
QLK6-CT-1999-02237 PREVENTION OF IRON STORAGE DISEASE IN THE AGEING POPULATION
QLK6-CT-1999-02094 VISUAL DISABILITY DUE TO MACULAR DEGENERATION IN ELDERLY EUROPEAN
POPULATIONS: A MULTICENTRE STUDY OF PREVALENCE AND RISK FACTORS
QLK6-CT-1999-02282 ROBOTIC ASSISTANCE IN NEURO AND MOTOR REHABILITATION
QLK6-CT-1999-02205 DISABILITY PREVENTION IN THE OLDER POPULATION : USE OF INFORMATION
TECHNOLOGY FOR HEALTH RISK APPRAISAL AND PREVENTION OF FUNCTIONAL
DECLINE
QLK6-CT-1999-02031 IMMUNOLOGY AND AGEING IN EUROPE
QLK6-CT-1999-02070 A EUROPEAN PROJECT TO DEVISE A HOSPITAL ADMISSION CASE-MIX SYSTEM FOR
ELDERLY PATIENTS, PLUS A STANDARDIZED METHOD OF RECORDING HOSPITAL
OUTCOME
QLK6-CT-1999-02238 THE FE65-APP-X11 PROTEIN-PROTEIN INTERACTION NETWORK: TOWARDS THE
GENERATION OF NEW MOLECULAR TOOLS FOR ALZHEIMER'S DISEASE DIAGNOSIS
AND THERAPY
QLK6-CT-1999-02108 NEW GENES AND TARGETS FOR OSTEOPOROSIS
QLK6-CT-1999-02173 HIGH FREQUENCY STIMULATION OF THE SUBTHALAMIC NUCLEUS: A THERAPEUTIC
APPROACH TO PARKINSON' S DISEASE
QLK6-CT-1999-02035 IMPLEMENTATION OF PATIENT INVOLVEMENT INSTRUMENTS TO IMPROVE GENERAL
PRACTICE CARE FOR OLDER PEOPLE IN EUROPE
26

Area 10 - Public Health and Health Services research (including drug-related problems)
Number Title
QLG4-CT-2001-02378 MENTAL HEALTH PREVENTION IN A TARGET GROUP AT RISK: CHILDREN OF
SOMATICALLY III PARENTS
QLG4-CT-2001-01496 GENDER, CULTURE AND ALCOHOL PROBLEMS: A MULTI-NATIONAL STUDY
QLG4-CT-2001-30216 GENETICS EDUCATION: IMPROVING NON-GENETIC HEALTH PROFESSIONALS
UNDERSTANDING OF GENETIC TESTING
QLG4-CT-2001-02424 HOME OR HOSPITAL IN HEART FAILURE
QLG4-CT-2001-02468 METHADONE MAINTENANCE AND HEALTH CARE FOR DRUG USERS: IDENTIFYING
BEST PRAXIS
QLG4-CT-2001-01907 MODELS OF ORGANIZING ACCESS TO INTENSIVE CARE FOR VERY PRETERM BIRTHS:
A STUDY OF 10 EUROPEAN REGIONAL HEALTH SYSTEMS
QLG4-CT-2001-01476 OCCUPATIONAL STRESS WITH MENTAL HEALTH CLIENTS IN ACUTE RESPONSE
QLG4-CT-2001-01550 DRUGS AND PSYCHOSIS
QLG4-CT-2001-01734 QUALITY OF LIFE FOLLOWING ADHERENCE THERAPY FOR PEOPLE DISABLED BY
SCHIZOPHRENIA AND THEIR CARERS
QLG4-CT-2000-00235 ACTION FOR ENHANCEMENT OF SAFETY AND GUARDING OF HEALTH FOR
PROFESSIONAL DRIVERS
QLG4-CT-2000-00612 EUROPEAN RESEARCH PROGRAMME FOR IMPROVED VACCINE SAFETY
SURVEILLANCE
QLG4-CT-2000-00640 PNEUMOCOCCAL DISEASE IN EUROPE
QLG4-CT-2000-00751 SCREENING FOR AND PROMOTION OF HEALTH RELATED QUALITY OF LIFE IN
CHILDREN AN ADOLESCENTS - A EUROPEAN PUBLIC HEALTH PERSPECTIVE
QLG4- CT-2000-00238 DEVELOPMENT OF MATHEMATICAL MODELS OF NOVEL HPV-BASED CERVICAL
CANCER SCREENING PROTOCOLS FOR EVALUATION OF THE PROJECTED HEALTH
AND COST BENEFITS
QLG4- CT-2000-01414 HEALTH CARE IN CHRONIC NON-FATAL DISEASE BY THE EXAMPLE OF
INFLAMMATORY BOWEL DISEASE
QLG4- CT-2000-01554 IMPACT OR TWO ALTERNATIVE STAFF TRAINING PROGRAMMES ON THE
IMPLEMENTATION AND EFFECTIVENESS OF A PSYCHOEDUCATIONAL INTERVENTION
FOR FAMILIES OF PATIENTS WITH SCHIZOPHRENIA.
QLG4- CT-2000-01700 PSYCHIATRIC DAY HOSPITAL TREATMENT: AN ALTERNATIVE TO INPATIENT
TREATMENT, BEING COST EFFECTIVE AND MINIMIZING POST-TREATMENT NEEDS
CARE? AN EVALUATIVE STUDY IN EUROPEAN AREAS WITH DIFFERENT CARE
SYSTEMS
QLG4- CT-1999-00873 TREAT 2000 - TREATMENT SYSTEM RESEARCH ON EUROPEAN ADDICTION
TREATMENT
QLG4-CT-1999-00105 HEROIN ADDICTS AND THEIR CHILDREN : A LONGITUDINAL COHORT STUDY OF
TREATMENT OUTCOMES
27

Area 11 - Research relating to Persons with Disabilities
Number Title
QLG5-CT-2001-30119 HEALTH RELATED QUALITY OF LIFE EDUCATION ON DIABETES
QLG5-CT-2000-00716 QUALITY OF LIFE IN CHILDREN AND ADOLESCENTS WITH DISABILITIES AND THEIR
FAMILIES - ASSESSING PATIENT VIEWS AND PATIENT NEEDS FOR COMPREHENSIVE
CARE
QLG5-CT-1999-01042 MENTAL HEALTH DISABILITY : A EUROPEAN ASSESSMENT IN THE YEAR 2000
Area 12 – Bioethics
Number Title
QLG6-CT-2002-02320 PUBLIC POLICIES, LAW AND BIOETHICS: A FRAMEWORK FOR PRODUCING PUBLIC
HEALTH POLICY ACROSS THE EUROPEAN UNION BY EXAMINING CONCEPTS OF
EUROPEAN AND UNIVERSAL ETHICAL GUIDELINES
QLG6-CT-2002-02594 THE DEVELOPMENT OF ETHICAL BIO-TECHNOLOGY ASSESSMENT TOOLS FOR
AGRICULTURE AND FOOD PRODUCTION
QLG6-CT-2001-00028 ALTERNATIVE METHODS IN ANIMAL EXPERIMENTATION: EVALUATING SCIENTIFIC,
ETHICAL AND SOCIAL ISSUES IN THE "3RS" CONTEXT
QLG6-CT-2001-00037 ETHICISTS AND PRACTITIONERS IN COLLABORATION ON CAPACITY
QLG6-CT-2001-00050 FICTION, SCIENCE AND SCIENCE FICTION. THE ROLE OF LITERATURE IN PUBLIC
DEBATES ON MEDICAL ETHICAL ISSUES AND IN THE MEDICAL EDUCATION.
QLG6-CT-2001-00056 IMPLEMENTATION OF THE DATA PROTECTION DIRECTIVE IN RELATION TO MEDICAL
RESEARCH AND THE ROLE OF ETHICS COMMITTEES
QLG6-CT-2001-00057 EUROPEAN INFORMATION NETWORK ETHICS IN MEDICINE AND
BIOTECHNOLOGY
QLG6-CT-2001-00062 ETHICAL, LEGAL AND SOCIAL ASPECTS OF HUMAN GENETIC DATABASES. A
EUROPEAN COMPARISON
QLG6-CT-2001-00063 EUROPEAN COOPERATION NETWORK TO COLLECT & DISPERSE ETHICAL, SAFETY &
REGULATORY DATA IN ORDER TO FACILITATE CLINICAL IMPLEMENTATION OF GENE
TRANSFER TECHNOLOGY (GENE THERAPY)
QLG6-CT-2001-00072 THE ETHICS OF HUMAN STEM CELL RESEARCH AND THERAPY IN EUROPE
QLG6-CT-2000-00859 MEDICAL END-OF-LIVE DECISIONS: ATTITUDES AND PRACTICES IN 6 EUROPEAN
COUNTRIES
QLG6-CT-2000-00964 ETHICAL ISSUES OF EVIDENCE BASED PRACTICE IN MEDICINE AND HEALTH CARE
QLG6-CT-1999-00957 ETHICAL ISSUES IN CLINICAL TRIAL COLLABORATIONS WITH DEVELOPING
COUNTRIES
QLG6-CT-1999-00353 TEACHING ETHICS: MATERIALS FOR PRACTITIONER EDUCATION
QLG6-CT-1999-00554 RATIONING OF MEDICAL SERVICES IN EUROPE: AN EMPIRICAL STUDY
QLG6-CT-1999-00933 SYSTEMATIC STUDY OF GENERAL ETHICAL PRINCIPLES INVOLVED IN END OF LIFE
DECISIONS FOR PATIENTS IN EUROPEAN INTENSIVE CARE UNITS
28

QLG6-CT-1999-00517 EMPIRICAL METHODS IN BIOETHICS
29