Servicio de Información Comunitario sobre Investigación y Desarrollo - CORDIS

A stepping stone approach towards the Genetics Clinic of the Future

Desde 2015-01-01 hasta 2017-06-30, proyecto cerrado

Detalles del proyecto

Coste total:

EUR 1 195 106,25

Aportación de la UE:

EUR 1 195 106,25

Coordinado en:

Netherlands

Convocatoria de propuestas:

H2020-HCO-2014See other projects for this call

Régimen de financiación:

CSA - Coordination and support action

Objetivo

Deliverables

  • Supporting materials for mutual learning event of experts including ambassadors

    Materials to support discussion process and mutual learning elements in moving away from the deficit model of communication.

  • Discussion guide for public focus groups

    A guide that serves as input for six to eight homogeneous discussion groups in different social groups and professional communities (e.g. patients, senior citizen centres, youth organisations, ethnic groups, etc.) in order to collect their opinions, expectations, ideas, concerns, and needs for further information or education.

  • Survey on patient involvement in design of data control mechanisms

    A series of freeform and structured interviews with relevant patients, patient relatives and patient representatives, the results of which will inform a survey (to gather further input, and seek views on proposed solutions) targeting the same classes of stakeholders plus consortia and networks of clinical diagnosticians, ethicists, and policymakers. This survey will be the basis for genuine patient involvement in developing control mechanisms over personal genome data. The survey will result in a set of recommendations to be implemented by the various patient organisations and hospitals.

  • GCOF portal

    The point of reference for all communication and implementation activities will be the GCOF portal (http://www.geneticsclinicofthefuture.org/), which we will set up as a virtual genetics clinic including all its elements and sections. At the portal we will collect all illustrations, text, data, documents and other materials that support the partners in the consortium in disseminating and communicating the elements of the GCOF.

  • Web-based overview of consent templates and frameworks that are currently in practice in various sectors working with privacy-sensitive data

    A collection of examples of current consent practices encountered throughout the different disciplines represented – online, and through internal and external partners’ networks, and an exploration of how clinical and research consent practices overlap and diverge.

  • Report on novel approaches to data access, including background study results and workshop report

    The report reflects on the 3 main activities of WP2: 1. Background research and expert interviews on existing and developing models for data access in health research, but also in less obvious areas like finance and social media; 2. A multidisciplinary European workshop on ‘novel approaches to data access’, of which outcomes and recommendations will be published; 3. Development of data access scenarios (e.g. access for patients, access for insurance companies) to be put to the test in the simulation project of Task 1.2.

  • White paper on patient perspectives with recommendations for novel approaches of collection, storage and distribution of clinical genomic data on rare and common diseases

    Based on the results of that survey and together with a multistakeholder group, we will compose a white paper that evaluates the possible benefit/harm of different types of results to the study subjects, plan generic ways of giving such results supported with information available on biobank website and draft a role for GCOFs for a more individual approach to returning the results.

  • Interim report to the European Commission

    A report in Month 15 that describes the progress in the project.

  • Report on future consent needs, and an updated consent framework for the GCOF

    A report on how the tension arising from conflicting principles of informed consent and respecting the individual’s right not to know can be tackled, and on the value of having a clear and flexible approach to consent.

  • Report on mutual learning in the genetics clinic of the future

    A report on mutual learning and debate models for societal implementation of future concepts. Both the ambassadors and the other experts shall use the available materials to disseminate the results among their peers and through their networks.

  • Evaluation report of the GCOF simulations

    A evaluation report on the various GCOF scenarios that will be effectuated based on simulated genomic data of 5-10 individuals.

  • Report on existing tools for collection, storage and distribution of clinical data, with best practice guideline on reporting results from research

    Evaluation of the two main models for data collection that are being examined: 1. data collection by patients/families using existing tools and those under development, e.g. web-based tools where patients/families can themselves fill in data . 2. collecting data from hospital files to specific registries either ‘conventionally’ by clinicians and researchers or with methods based on electronic, structured health records which enable automated collection of the data.

  • Document describing outcome of stakeholder-engagement workshop identifying potential policy options

    Document on the exploration of relevant policy issues for data sharing emerged in the context of rare disease registries via background research, based on relevant European initiatives (e.g. BBMRI, GEN2PHEN, PACITA), input from the other WPs and participation of WP6 members in activities in the other WPs, predominantly WP2 and WP4. We will generate a list of policy issues that will serve as an initial framework to guide the other activities in WP6.

  • Report on health economic aspects of the GCOF

    A summary report of Task 6.2, describing: - a framework to standardize and automate data extraction (in terms of collecting, storing and distributing data) for policy making around the GCOF; to enable efficient and cost-effective research in the field of genetics it is essential to link patient registries in hospitals and to automate data extraction.  standardized methods in research around health economic aspects of the GCOF; to enable more efficient decision-making. Which data should be collected, what are the outcome measures, what is the link between better diagnostics and treatment are essential questions to be answered.  how the economic, societal and political value for genomic data can be assessed (e.g. for reimbursement of care, or trading genomic data); one of the questions to be answered by many of the stakeholders is whether a genetic test has added value (e.g. for economy, for the clinic, or for society as a whole). These outcomes should be the result of extensive discussions with researchers in the clinic who have set up the research questions for innovative approaches.

  • Database containing simulated whole-exome or whole-genome sequencing data from 5-10 individuals

    We will generate simulated whole exome or whole genome sequencing data from 5-10 individuals, each with specific mutations and other variants that evoke challenging scenarios in the GCOF. We will introduce both known mutations (e.g. BRCA1) and hypothetical ones (e.g. a ‘happiness’ variant) in these data. The hypothetical variants are not necessarily expected to be identified in future genetic research; they rather reflect controversial topics that could be appearing from general health-related research, and that could evoke fundamental societal challenges. The data will be stored on a central server (Cartagenia, biologis) and made available for all stakeholders in the project in a controlled and condensed way.

Publications

Publications not available

Coordinador

UNIVERSITAIR MEDISCH CENTRUM UTRECHT
Netherlands

Aportación de la UE: EUR 201 250


HEIDELBERGLAAN 100
3584 UTRECHT
Netherlands
Activity type: Higher or Secondary Education Establishments

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Participantes

THE CHANCELLOR, MASTERS AND SCHOLARS OF THE UNIVERSITY OF OXFORD
United Kingdom

Aportación de la UE: EUR 102 500


WELLINGTON SQUARE UNIVERSITY OFFICES
0012 OXFORD
United Kingdom
Activity type: Higher or Secondary Education Establishments

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OPEN SCIENCE - LEBENSWISSENSCHAFTENIM DIALOG VEREIN
Austria

Aportación de la UE: EUR 92 187,50


RENNWEG 95B
1030 Vienna
Austria
Activity type: Research Organisations

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European Organisation for Rare Diseases
France

Aportación de la UE: EUR 72 543,75


RUE DIDOT 96
75014 Paris
France
Activity type: Private for-profit entities (excluding Higher or Secondary Education Establishments)

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OBSERVA
Italy

Aportación de la UE: EUR 85 000


VIALE A FUSINIERI 65
36100 VICENZA
Italy
Activity type: Research Organisations

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UNIVERSITY OF LEICESTER
United Kingdom

Aportación de la UE: EUR 134 250


UNIVERSITY ROAD
LE1 7RH LEICESTER
United Kingdom
Activity type: Higher or Secondary Education Establishments

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TERVEYDEN JA HYVINVOINNIN LAITOS
Finland

Aportación de la UE: EUR 105 312,50


MANNERHEIMINTIE 166
00271 HELSINKI
Finland
Activity type: Research Organisations

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INSTITUTET FOR FREMTIDSFORSKNING FORENING
Denmark

Aportación de la UE: EUR 70 000


LANDGREVEN 3 1 TH
1301 KOBENHAVN
Denmark
Activity type: Research Organisations

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BIO.LOGIS GENETIC INFORMATION MANAGEMENT GMBH
Germany

Aportación de la UE: EUR 72 500


Altenhöferallee 3
60438 Frankfurt am Main
Germany
Activity type: Private for-profit entities (excluding Higher or Secondary Education Establishments)

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UNIVERSIDADE NOVA DE LISBOA
Portugal

Aportación de la UE: EUR 127 500


CAMPUS DE CAMPOLIDE
1099085 LISBOA
Portugal
Activity type: Higher or Secondary Education Establishments

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INSTITUTO DE TECNOLOGIA QUIMICA E BIOLOGICA - UNIVERSIDADE NOVA DE LISBOA
La participación finalizó
Portugal

Aportación de la UE: EUR 0


Avenida da Republica, Estacao Agronomica Nacional
2784-505 OEIRAS
Portugal
Activity type: Higher or Secondary Education Establishments

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CARTAGENIA NV
Belgium

Aportación de la UE: EUR 65 000


TECHNOLOGIELAAN 3
3001 LEUVEN
Belgium
Activity type: Private for-profit entities (excluding Higher or Secondary Education Establishments)

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SCHUURBIERS DANIEL
Netherlands

Aportación de la UE: EUR 67 062,50


JOSEF ISRAELSLAAN 63
6813 ARNHEM
Netherlands
Activity type: Private for-profit entities (excluding Higher or Secondary Education Establishments)

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