GCOF project deliverables
The page lists 15 deliverables related to the research project "GCOF".
List of Deliverables
| title and desprition | type | last update |
|---|---|---|
Report on health economic aspects of the GCOFA summary report of Task 6.2, describing: Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |
Report on mutual learning in the genetics clinic of the futureA 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |
Report on future consent needs, and an updated consent framework for the GCOFA 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |
Web-based overview of consent templates and frameworks that are currently in practice in various sectors working with privacy-sensitive dataA 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Websites, patent fillings, videos etc. | 2019-07-23 |
Database containing simulated whole-exome or whole-genome sequencing data from 5-10 individualsWe 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Other | 2019-07-23 |
Evaluation report of the GCOF simulationsA evaluation report on the various GCOF scenarios that will be effectuated based on simulated genomic data of 5-10 individuals. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |
GCOF portalThe 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Websites, patent fillings, videos etc. | 2019-07-23 |
Survey on patient involvement in design of data control mechanismsA 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Websites, patent fillings, videos etc. | 2019-07-23 |
Report on novel approaches to data access, including background study results and workshop reportThe report reflects on the 3 main activities of WP2: Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |
Discussion guide for public focus groupsA 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Websites, patent fillings, videos etc. | 2019-07-23 |
Document describing outcome of stakeholder-engagement workshop identifying potential policy optionsDocument 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |
Supporting materials for mutual learning event of experts including ambassadorsMaterials to support discussion process and mutual learning elements in moving away from the deficit model of communication. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Websites, patent fillings, videos etc. | 2019-07-23 |
Report on existing tools for collection, storage and distribution of clinical data, with best practice guideline on reporting results from researchEvaluation of the two main models for data collection that are being examined: Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |
Interim report to the European CommissionA report in Month 15 that describes the progress in the project. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |
White paper on patient perspectives with recommendations for novel approaches of collection, storage and distribution of clinical genomic data on rare and common diseasesBased 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. Programme: H2020-EU.3.1. - Topic(s): HCO-15-2014 |
Documents, reports | 2019-07-23 |