Table Of Content. Outputs... 9

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1 Table Of Content European Best Practice Guidelines for QA, Provision and Use of Genome-based Information and Technologies... 3 Summary... 4 Coordinator, Leader contact and partners... 5 Philipps-Universität Marburg - PUMa (until 01/10/2010)... 5 University of Debrecen, Medical and Health Science Centre... 5 Max Planck Institute for Molecular Genetics... 5 Norwegian Group on Inherited Cancer... 5 University of Twente (from 18/01/2010)... 5 Instituto Nacional de Saude Dr Ricardo Jorge... 5 Syddansk Universitet / University of Southern Denmark... 5 Ruhr-Universität Bochum... 5 National Institute of Public Health- National Institute of Hygiene... 5 Fundación Centro Nacional de Investigaciones Oncológicas Carlos III... 5 University of Vienna... 5 Medical University of Varna, Faculty of Public Health... 5 Osteba, Basque Office for HTA. Deparment of Health. Basque Country... 5 Fondazione IRCCS, Ca' Granda Ospedale Maggiore Policlinico - IRCCS... 5 Universita Cattolica del Sacro Cuore... 5 Genetic Alliance UK Ltd - GA... 5 Friedrich-Alexander-Universität Erlangen-Nürnberg - FAU (from 01/10/2010)... 5 Vrije Universitait Amsterdam... 5 BioGlobe GmBH... 5 Institut National de la Santé et de la Recherche Médicale... 5 KATHOLIEKE UNIVERSITEIT LEUVEN... 5 Outputs... 9 D01 - Project website with Wiki components which are used for the evaluation of the porject and public consultations (assurance phase of the project) (EN)... 9 D Compilation of the existing evidence in the field of Genome-based Information (EN)... 9 D Compilation of the existing evidence in the field of Genome-based Information (EN)... 9 D Development of a guideline for the guidelines (for Quality Assurane Provision, Use) by the Core Group (EN)... 9 D Development of a guideline for the guidelines (for Quality Assurane Provision, Use) by the Core Group (EN)... 9 D Interim Financial and Technical report (EN)... 9 D Interim Financial and Technical report (EN)... 9 D Interim Financial and Technical report (EN)... 9 D05 - Interim Report of the guidelines for Quality Assurance of Genome-based Information and Technologies (EN)... 9 D06 - Interim report of the Guidelines for the Provision of Genome-based Information and Technologies (EN)... 9 D07 - Interim Report of the Guidelines for the Use of Genome-based Information and Technologies (EN)... 9 D08 - Final scientifi endorsement panel where the guidelines are presented and discussed (assurance phase of the project) and final Conference of PHGEN II (EN)... 9 Page 1/18

2 D EU Guidelines QA, Provision, Use of Genome-based Information and Technologies and Final Report & Feedback (EN)... 9 D EU Guidelines QA, Provision, Use of Genome-based Information and Technologies and Final Report & Feedback (EN)... 9 D10 - Internal Delphi assessment and publi consultation processes (assurance phase of the project) (EN)... 9 D Final Technical and Financial Report (EN)... 9 D Final Technical and Financial Report (EN)... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and Results (IT)... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 D Dissemination of Progress and... 9 Final Report (EN)... 9 Internal Assessment (EN)... 9 Page 2/18

3 European Best Practice Guidelines for QA, Provision and Use of Genomebased Information and Technologies JA GPSD [705038] START DATE: 01/06/2009 END DATE: 01/12/2012 DURATION: 42 month(s) CURRENT STATUS: Finalised PROGRAMME TITLE: Second Programme of Community action in the Field of Health PROGRAMME PRIORITY: - CALL: Generate And Disseminate Health Information And Knowledge (Hi-2008) TOPIC: Exchange knowledge and best practice EC CONTRIBUTION: EUR KEYWORDS: Collection of Best Practices, HTA, Innovation initiatives, Research PORTFOLIO: Health technology assessment, Screening and genetics Page 3/18

4 SUMMARY General objectives PHGEN II produces the first edition of "European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-based Information and Technologies". The guidelines assist Member States, Applicant and EFTA-EEA Countries with evidence-based guidance on timely and responsible integration of genome-based information and technologies into healthcare systems for the benefit of population health. Strategic relevance and contribution to the public health programme Development of a common understanding of Public Health Genomics between all stakeholders in Europe and identification of the need for European coherent guidelines in that field. Methods and means PHGEN II will compile existing guidelines/best practice recommendations and review the available evidence including emerging evidence from relevant European research and health action networks. A "checklist/reference frame" for the guidelines will be developed. PHGEN II will use the checklist to identify common denominators in the existing evidence and to detect gaps. Then, PHGEN II will develop and test the European Best Practice Guidelines and strives for the endorsement through the panel by mechanism described in the bylaws. Expected outcomes period PHGEN II produces the first edition of "European Best Practice Guidelines for Quality Assurance, Provision and Use of Genome-based Information and Technologies". The guidelines assist Member States, Applicant and EFTA-EEA Countries with evidencebased guidance on timely and responsible integration of genome-based information and technologies into healthcare systems for the benefit of population health. Page 4/18

5 COORDINATOR, LEADER CONTACT AND PARTNERS COORDINATOR () Universiteitssingel Maastricht Netherlands Project leader contact Name: Brand Angela a.brand@maastrichtuniversity.nl Phone: PARTNERS Philipps-Universität Marburg - PUMa (until 01/10/2010) Street: Lahntor 3 City: Marburg Country: Germany University of Debrecen, Medical and Health Science Centre Street: Kassai út 26/b City: 4028 Debrecen Country: Hungary Max Planck Institute for Molecular Genetics Street: Ihnestr. 73 City: Berlin Country: Germany Norwegian Group on Inherited Cancer Page 5/18

6 Street: Haukeland University Hospital City: N-5021 Bergen Country: Norway University of Twente (from 18/01/2010) Street: Drienerlolaan 5 City: 7522 NB Enschede Country: Netherlands Instituto Nacional de Saude Dr Ricardo Jorge Street: Av Padre Cruz, s/n City: Lisboa Country: Portugal Syddansk Universitet / University of Southern Denmark Street: J.B. Winsløws Vej 9b City: DK 5000 Odense Country: Denmark Ruhr-Universität Bochum Street: Universitätsstr. 150 City: Bochum Country: Germany National Institute of Public Health- National Institute of Hygiene Street: Chocimska 24 City: Warsaw Country: Poland Fundación Centro Nacional de Investigaciones Oncológicas Carlos Page 6/18

7 III Street: Melchor Fernández Almagro, 3 City: Madrid Country: Spain University of Vienna Street: Althanstrasse 14 City: 1090 Wien Country: Austria Medical University of Varna, Faculty of Public Health Street: Marin Drinov 55 City: 9002 Varna Country: Bulgaria Osteba, Basque Office for HTA. Deparment of Health. Basque Country Street: Donostia-San Sebastian, 1 City: Vitoria-Gasteiz Country: Spain Fondazione IRCCS, Ca' Granda Ospedale Maggiore Policlinico - IRCCS Street: Via Francesco Sforza n. 28 City: Milano Country: Italy Universita Cattolica del Sacro Cuore Street: Largo Agostino Gemelli 1 City: Milano Country: Italy Genetic Alliance UK Ltd - GA Page 7/18

8 Street: Unit 4D, Leroy House 436 Essex Road City: N1 3QP London Country: United Kingdom Friedrich-Alexander-Universität Erlangen-Nürnberg - FAU (from 01/10/2010) Street: Schlossplatz 4 City: Erlangen Country: Germany Vrije Universitait Amsterdam Street: De Boelelaan 1085 City: 1081 Amsterdam Country: Netherlands BioGlobe GmBH Street: Grandweg 64 City: Hamburg Country: Germany Institut National de la Santé et de la Recherche Médicale Street: 37 allées Jules Guesde City: F Toulouse Cedex Country: France KATHOLIEKE UNIVERSITEIT LEUVEN Street: Oude Markt 13 City: 3000 Leuven Country: Belgium Page 8/18

9 OUTPUTS D01 - Project website with Wiki components which are used for the evaluation of the porject and public consultations (assurance phase of the project) (EN) s.pdf D Compilation of the existing evidence in the field of Genome-based Information (EN) D Compilation of the existing evidence in the field of Genome-based Information (EN) D Development of a guideline for the guidelines (for Quality Assurane Provision, Use) by the Core Group (EN) Page 9/18

10 n_is.pdf D Development of a guideline for the guidelines (for Quality Assurane Provision, Use) by the Core Group (EN) D Interim Financial and Technical report (EN) n_is.pdf D Interim Financial and Technical report (EN) n_is.pdf D Interim Financial and Technical Page 10/18

11 report (EN) D05 - Interim Report of the guidelines for Quality Assurance of Genome-based Information and Technologies (EN) s.pdf D06 - Interim report of the Guidelines for the Provision of Genome-based Information and Technologies (EN) s.pdf D07 - Interim Report of the Guidelines for the Use of Genome-based Information and Technologies (EN) s.pdf Page 11/18

12 D08 - Final scientifi endorsement panel where the guidelines are presented and discussed (assurance phase of the project) and final Conference of PHGEN II (EN) s.pdf D EU Guidelines QA, Provision, Use of Genome-based Information and Technologies and Final Report & Feedback (EN) D EU Guidelines QA, Provision, Use of Genome-based Information and Technologies and Final Report & Feedback (EN) D10 - Internal Delphi assessment and publi consultation processes (assurance phase of the Page 12/18

13 project) (EN) s.pdf D Final Technical and Financial Report (EN) D Final Technical and Financial Report (EN) n_is.pdf D Dissemination of Progress and D Dissemination of Progress and Page 13/18

14 D Dissemination of Progress and D Dissemination of Progress and D Dissemination of Progress and D Dissemination of Progress and Page 14/18

15 D Dissemination of Progress and D Dissemination of Progress and D Dissemination of Progress and D Dissemination of Progress and Page 15/18

16 D Dissemination of Progress and D Dissemination of Progress and n_ps1.pdf D Dissemination of Progress and Results (IT) _ps.pdf D Dissemination of Progress and Page 16/18

17 D Dissemination of Progress and D Dissemination of Progress and D Dissemination of Progress and D Dissemination of Progress and Page 17/18

18 Powered by TCPDF ( Final Report (EN) Internal Assessment (EN) Page 18/18