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Report on Opportunities and Obstacles of Combining HBM and Health

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Report on Opportunities and Obstacles of Combining HBM and Health Ref. Ares(2018)446716 - 25/01/2018 HORIZON2020 Programme Contract No. 733032 HBM4EU Report on opportunities and obstacles of combining HBM and health studies, availability of health studies with biological samples, availability of administrative registers, and guidelines for combining HBM and health studies Deliverable Report D 11.1 WP 11 - Linking HBM, health studies and registers Deadline: December 2017 Upload by Coordinator: 25 January 2018 Entity Name of person responsible Short name of Received institution [Date] Coordinator Marike Kolossa-Gehring UBA 18/01/2018 (revised) 15/12/2017 Grant Signatory Juhani Eskola THL 18/01/2018 Pillar Leader Robert Barouki INSERM 18/01/2018 Work Package Hanna Tolonen THL 18/01/2018 Leader Task leader Anna-Maria Andresson (Task RegionH 17/01/2018 11.1) Hanna Tolonen (Task 11.2) THL Helle Margrete Meltzner (Task NIPH 11.5) D 11.1 - Report on opportunities and obstacles of combining HBM and health studies Security: Public WP 11 - Linking HBM, health studies and registers Version: 2.0 Authors: Hanna Tolonen et al. Page: 2 Responsible author Hanna Tolonen E-mail [email protected] Short name of THL Phone +358 29 524 8638 institution Co-authors Stine Agegaard Holmboe (RegionH), Carla Ancona (DEP), Anna- Maria Andersson (RegionH), Alessandro Alimonti (ISS), Ingvar Bergdahl (UMU), Marika Berglund (KI), Stefaan Demarest (WIV- ISP), Carlos Dias (INSA), Ladislav Dusek (IHIS), Hanns Hoshammer (MUW), Lisbeth K Knudsen (UCPH), Tina Kold Jensen (SDU), Gudrun Koppen (VITO), Merja Korkalainen (THL), Dominik Lermen (IBMT), Ondrej Majek (IHIS), Georgia Martimianaki (HHF), Helle Margrete Meltzner (NIPH), Sónia Namorado (INSA), Baltazar Nunes (INSA), Tarja Palosaari (THL), Loïc Rambaud (ANSP), Panu Rantakokko (THL), Greet Schoeters (VITO), Eva Schernhammer (MUW), Romuald Tagne-Fotso (ANSP), Päivi Ruokojärvi (THL), Antonia Trichopoulou (HHF), Elisavet Valanou (HHF), Ana Patrícia Lopes Virgolino (FMUL), Maria Wennberg (UMU), Agneta Åkersson (KI), Gerda Schwedler (UBA) D 11.1 - Report on opportunities and obstacles of combining HBM and health studies Security: Public WP 11 - Linking HBM, health studies and registers Version: 2.0 Authors: Hanna Tolonen et al. Page: 3 Table of contents Abbreviations ................................................................................................................................ 6 Introduction ................................................................................................................................. 10 Part A - Opportunities and obstacles of combining HBM and health studies ........................ 11 1 Authors and Acknowledgements ....................................................................................... 12 2 Background .......................................................................................................................... 13 3 Objective .............................................................................................................................. 14 4 Methods ................................................................................................................................ 15 4.1 Identification of ongoing or planned health and cohort studies ........................................ 15 4.2 Development and distribution of the questionnaire .......................................................... 15 5 Results .................................................................................................................................. 16 5.1 Analysis of data from the WP11, Task 11.1 questionnaire .............................................. 16 5.1.1 Studies reported ...................................................................................................... 16 5.1.2 Collection of biological samples ............................................................................... 16 5.1.3 Characterization of the studies with possibility of sampling ...................................... 17 5.1.4 Storage of biological samples .................................................................................. 22 5.1.5 Chemicals measured ............................................................................................... 24 5.1.6 Description of the studies ......................................................................................... 24 5.1.7 Health and lifestyle parameters ................................................................................ 27 5.1.8 Registers ................................................................................................................. 29 5.1.9 Health outcomes ...................................................................................................... 30 5.1.10 Ethical approval ....................................................................................................... 31 5.1.11 IPChem – the Information Platform for Chemical monitoring .................................... 32 5.1.12 Obstacles in linking HBM and HES .......................................................................... 32 5.2 Analysis of data from WP7, Task 7.1 questionnaire ........................................................ 32 5.3 Experiences from Germany, France and Israel ............................................................... 34 5.3.1 Study characteristics ................................................................................................ 35 5.3.2 Initiation of the combined HES and HBM survey ...................................................... 35 5.3.3 Potential advantages and opportunities ................................................................... 36 5.3.4 Potential obstacles ................................................................................................... 36 5.4 Learning from the results of BRIDGE Health ................................................................... 37 6 Conclusions ......................................................................................................................... 38 7 Appendices .......................................................................................................................... 39 7.1 Appendix 1: Questionnaire for researchers working with health examination surveys, occupational surveys and other health interview surveys ................................................ 39 7.2 Appendix 2: WP 11.1 Questionnaire for researchers working with human biomonitoring surveys ........................................................................................................................... 49 D 11.1 - Report on opportunities and obstacles of combining HBM and health studies Security: Public WP 11 - Linking HBM, health studies and registers Version: 2.0 Authors: Hanna Tolonen et al. Page: 4 7.3 Appendix 3: WP 11.1 Questionnaire for researchers working with combined health examination surveys and human biomonitoring surveys ............................................................ 58 7.4 Appendix 4: Email invitation - Notifying email to participants ........................................... 62 7.5 Appendix 5: Email invitation - Notifying email to NHCP ................................................... 63 7.6 Appendix 6: Questionnaire: Evaluating opportunities and obstacles of combining HBM and health studies: lessons from countries that have ongoing combined programmes ... 64 7.7 Appendix 7: Acronyms, names, websites and organizing institutions of the studies where biological samples are collected or could be collected .......................................... 66 7.8 Appendix 8: Studies selected from the Task 7.1 questionnaire ....................................... 72 7.9 Appendix 9: Final selection of studies from the Task 7.1 questionnaire, biological samples collected and measurements performed ........................................................... 75 Part B - Availability of administrative registers and possibilities for their use in HBM studies .................................................................................................................. 79 1 Authors and Acknowledgements ....................................................................................... 80 2 Background .......................................................................................................................... 81 3 Methods ................................................................................................................................ 82 3.1 Preparation of the questionnaire ..................................................................................... 82 3.2 Identification of administrative registers .......................................................................... 82 4 Results .................................................................................................................................. 83 4.1 Health related administrative registers ............................................................................ 83 4.2 Types of personal identifiers used in different registers ................................................... 83 4.3 Information covered by the registers ............................................................................... 86 4.3.1 Main purposes of the registers ................................................................................. 86 4.3.2 Availability of registers electronically and updating frequency .................................. 87 4.3.3 Size of the registers ................................................................................................
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