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Beyond 1M Genomes

Deliverables

Phenotypic and clinical metadata framework - 1v0

A dynamic and iterative roadmap as well as publication of an iterative document towards an established framework that can be used by the relevant 1MG working groups to agree on a minimal phenotypic and clinical dataset to run chosen Use Cases

Project Handbook 1v0

Initial version of the Project Handbook following Open PM2 best practices

Report of Stakeholders Forum 2021 including recommendations to the 1+MG Working Groups

Report of Stakeholders Forum 2021 including recommendations to the 1MG Working Groups Alignment with stakeholders engagement activities

Generation of a stakeholder portal within the project webpage containing the information resulting from the activities of the SCG

Functional description of the stakeholder portal available from the project website

​Project Handbook 2v0

Update of the Project Handbook including update on the KPIs

Document describing the operational organisation and processes for the SCG

Analysis of requirements and the operational organisation and process to implement the SCG

Communication Strategy

Consortium communication strategy including assets tools guidelines and targets

Documented best practices in sharing and linking phenotypic and genetic data - 1v0

Publication of an iterative document on available best practices in sharing and linking phenotypic and genetic data

Policy briefs - 1v0

First policy briefs deliverable

Stakeholders trust in genomic data sharing landscape analysis

Stakeholders trust in genomic data sharing landscape analysisAlignment with stakeholders engagement activities and reviewers recommendations

Catalogue of met and unmet use cases WGs requirements 1v0

Catalogue of met and unmet use cases WGs requirements 1v0

Quality metrics for sequencing

Establishment of a salient set of metrics to assess the quality of an NGS sequencing analysis

Analysis and assessment of mirror groups

Based on data collected from mirror groups

Secure cross-border data access roadmap - 1v0

A snapshot v1 of a dynamic roadmap document for secure crossborder data access

Publications

B1MG M3.3 List of best practices in sharing and linking phenotypic and genetic data

Author(s): Belien, Jeroen
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5770499

Draft version for stakeholder interaction and discussion - B1MG Policy Document - B1MG WP2 - Recommendation of minimal standards for feedback provision of results of research studies conducted with data provided through 1+MG to data subjects

Author(s): Rebers, Susanne
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6362164

Draft version for stakeholder interaction and discussion - Scope of the 1+MG Initiative v1.1

Author(s): Becker, Regina; Thorogood, Adrian; B1MG WP2; 1+MG WG2
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6363119

Draft version for stakeholder interaction and discussion - 1+MG Incidental Findings Policy - Background and References

Author(s): Rebers, Susanne; Thorogood, Adrian; B1MG WP2; 1+MG WG2
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6362131

Draft version for stakeholder interaction and discussion - B1MG D2.3 Report on legal set-up including DPIA

Author(s): Bovenberg, Jasper; Becker, Regina; Thorogood, Adrian
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6365738

B1MG M6.1 Project Mobilised. All B1MG Governing Boards in place

Author(s): Arenas Marquez, Juan; Coutts, Nikki
Published in: 2020
Publisher: Zenodo
DOI: 10.5281/zenodo.4291925

B1MG M5.2 Maturity level model defined_ standards, indicators and review

Author(s): Lopes, Fátima; Vicente, Astrid
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5770487

B1MG First Stakeholder meeting 16/10/2020 - agenda and slides

Author(s): Horgan, Denis; Kok, Ruben; Scollen, Serena; Arenas Marquez, Juan
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6400907

B1MG M6.2 Mirror groups survey

Author(s): Rodriguez, Esther; Lopez Parra, Pepa
Published in: 2020
Publisher: Zenodo
DOI: 10.5281/zenodo.4291930

Draft version for stakeholder interaction and discussion - 1+MG Recommendations for a Data Access Governance Framework (Research Purposes)

Author(s): Thorogood, Adrian; Becker, Regina; 1+MG WG2; B1MG WP2
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6363157

B1MG D3.7 - Documented best practices in sharing and linking phenotypic and genetic data - 2v0 (revised)

Author(s): Belien, Jeroen; Pinto, Catia; Ligtvoet, Maarten; Urbini, Milena; Volkert, Pim; Gu, Wei; Tebaldi, Michela; Patocs, Attila; van der Velde, K.Joeri; van Gijn, Marielle E; Korbel, Jan O; Padella, Antonella; Valencia, Alfonso; Pedrera, Miguel; Serrano, Pablo; Parra, Carlos; Beltran, Sergi; Muñoz, Adolfo
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5780228

B1MG D1.1 Document describing the operational organisation and processes for the Stakeholder Coordination Group (SCG)

Author(s): Horgan, Denis; Kok, Ruben; Bernini, Chiara; Andreu, Toni; Oldoni, Emanuela; van Rijswijk, Merlijn
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5786736

B1MG M2.3 Draft report on legal set-up including DPIA

Author(s): Bovenberg, Jasper; Becker, Regina; Thorogood, Adrian; Tzortzatou, Olga
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6376292

B1MG M3.2 Outcome of consultation on sequencing practices. A report on the status of procedures for WGS and WES across Europe will be prepared

Author(s): Gut, Ivo; Estelles, Lucia
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5770501

Draft version for stakeholder interaction and discussion - 1+MG Incidental Findings Policy - Summary and Recommendations

Author(s): Rebers, Susanne; Thorogood, Adrian; B1MG WP2; 1+MG WG2
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6362089

D4.1Secure cross-border data access roadmap — 1v1r1

Author(s): Spalding, Dylan; Nyrönen, Tommi; Lehväslaiho, Heikki; Riski, Riku; Lappalainen, Ilkka; Persson, Bengt; Beltran, Sergi; Becker, Regina; Arenas Marquez, Juan
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.6139231

B1MG M2.1 Inventory of relevant stakeholders, initiatives and policies that can give inputs to B1MG WP2

Author(s): Panagiotopoulou, Maria; Mayrhofer, Michaela Th.
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5006455

B1MG M6.3 Project website is live

Author(s): Cook, Martin; Perez Sitja, Xenia
Published in: 2020
Publisher: Zenodo
DOI: 10.5281/zenodo.4291920

B1MG M2.2 Draft policies and best practice guidelines

Author(s): Rebers, Susanne; Mežinska, Signe; Matei, Mihaela; Thorogood, Adrian; Becker, Regina
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6362216

B1MG D6.4 Project Handbook 2v0

Author(s): Arenas Marquez, Juan; Coutts, Nikki; Perez Sitja, Xenia
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5704929

B1MG D6.1 - Project Handbook 1v0

Author(s): Arenas Marquez, Juan; Coutts, Nikki; Hurst, Hannah
Published in: 2020
Publisher: Zenodo
DOI: 10.5281/zenodo.5018457

B1MG D6.3 - Communication Strategy

Author(s): Perez Sitja, Xenia; Arenas Marquez, Juan; Oldoni, Emanuela; Coutts, Nikki
Published in: 2020
Publisher: Zenodo
DOI: 10.5281/zenodo.5018436

Draft version for stakeholder interaction and discussion - B1MG Legal Taxonomy status-April 2021 - Taxonomy of member state legal requirements applicable to cross-border exchange of health and genetic data in the European 1+MG Project

Author(s): Tzortzatou, Olga; Thorogood, Adrian; Becker, Regina; B1MG WP2; 1+MG WG2
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6362332

B1MG M5.1 Country exchange visits concluded

Author(s): Scollen, Serena; Merchant, Arshiya; Vicente, Astrid; Costa, Alexandra; Lopes, Fátima
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5801715

B1MG D3.1 - Quality metrics for sequencing

Author(s): Gut, Ivo; Estelles, Lucia; Cuppen, Edwin; Wirta, Valtteri; Hovig, Eivind; Volkert, Pim; Matthijs, Gert
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5018495

Presentation - Introduction to B1MG and 1+MG

Author(s): Arenas Marquez, Juan; Scollen, Serena
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6400728

B1MG M1.2 Stakeholder Coordination Group portal goes live

Author(s): Oldoni, Emanuela; Andreu, Toni; Arenas Marquez, Juan; Horgan, Denis; Bernini, Chiara; Kok, Ruben
Published in: 2020
Publisher: Zenodo
DOI: 10.5281/zenodo.4291938

Draft version for stakeholder interaction and discussion - Recommendations for a 1+MG Data Inclusion Governance Framework

Author(s): Thorogood, Adrian; Becker, Regina; B1MG WP2; 1+MG WG2
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6363179

B1MG D1.5 Stakeholders trust in genomic data sharing landscape analysis

Author(s): Horgan, Denis; Boccia, Stefania; Becker, Regina; Scollen, Serena; Merchant, Arshiya; van El, Carla; Hoxaj, Ilda; Sassano, Michele; Pezzullo, Angelo; Julkowska, Daria
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6382431

B1MG D6.8 - Policy briefs - 1v0

Author(s): López, Pepa; Rodríguez, Esther
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5727650

B1MG M3.4 The B1MG data analysis challenge call

Author(s): Gut, Ivo; Estelles, Lucia
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5770489

B1MG D1.2 - Generation of a stakeholder portal within the project webpage containing the information resulting from the activities of the SCG

Author(s): Oldoni, Emanuela; Andreu, Toni; van Rijswijk, Merlijn; Kok, Ruben; Perez Sitja, Xenia; Coutts, Nikki; Arenas Marquez, Juan
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5018381

B1MG M2.4 Draft policy and access framework for discussion with internal and external stakeholders

Author(s): Becker, Regina; Thorogood, Adrian
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6363246

B1MG M3.1 Outcome of consultation on applied quality metrics published.

Author(s): Gut, Ivo; Beliën, Jeroen
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.4558898

B1MG 2nd Stakeholder meeting (17/11/2021) - agenda

Author(s): Scollen, Serena; Kok, Ruben; Horgan, Denis; Coutts, Nikki
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6402273

Draft version for stakeholder interaction and discussion - 1+MG Consent Recommendations

Author(s): Matei, Mihaela; Panagiotopoulou, Maria; Thorogood, Adrian; Chokoshvili, Davit; Becker, Regina; 1+MG WG2; B1MG WP2
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6363194

Draft version for stakeholder interaction and discussion - B1MG Policy Document - B1MG WP2 - Recommendations for a 1+MG Minimal Standards for Inclusion of Special Subjects

Author(s): Mežinska, Signe; Becker, Regina; Matei, Mihaela; Rebers, Susanne; Thorogood, Adrian
Published in: 2022
Publisher: Zenodo
DOI: 10.5281/zenodo.6362184

B1MG M1.1 - Establishment of Stakeholder Coordination Group

Author(s): Horgan, Denis
Published in: 2020
Publisher: Zenodo
DOI: 10.5281/zenodo.4291959

B1MG D6.6 - Analysis and assessment of mirror groups

Author(s): Lopez, Pepa; Rodriguez, Esther; Arenas Marquez, Juan
Published in: 2021
Publisher: Zenodo
DOI: 10.5281/zenodo.5018535

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