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European Reference Network on GEnetic TUmour RIsk Syndromes - GENTURIS [ERN GENTURIS] [768995] - Operating Grant
Periodic Financial report / annual report for EC lead by RUMC - [D.11]
Type: Document, reports...
Published on: 22/05/2018

Periodic report via Participant Portal
Board policies, rules of procedure lead by RUMC - [D.2]
Type: Document, reports...
Published on: 18/05/2018

The role and responsibilities of the Board are clearly defined and documented in a set of governance policies or rules of procedure.

The Rules of Procedure should include a model of written cooperati...
The role and responsibilities of the Board are clearly defined and documented in a set of governance policies or rules of procedure.

The Rules of Procedure should include a model of written cooperation agreements to be signed by the Affiliated Partners including, at a minimum, their specific role concerning their active involvement and obligation to follow the rules and procedures established by the Network, in accordance with the relevant operational criteria for the Networks

Network Monitoring System and evaluation protocol lead by RUMC - [D.3]
Type: Document, reports...
Published on: 18/05/2018

A Network Monitoring System including process and outcome indicators and evaluation protocol
GENTURIS strategic plan lead by RUMC - [D.4]
Type: Document, reports...
Published on: 18/05/2018

We will gradually increase the number of centres, the diversity of expertise within centres, including proactively affiliated centres from all EU countries.
We will increase the number of syndromes ...
We will gradually increase the number of centres, the diversity of expertise within centres, including proactively affiliated centres from all EU countries.
We will increase the number of syndromes in thematic group 4: other rare predominantly malignant genetic tumour risk syndromes.
We will be developing our ERN GENTURIS, with an actively inclusive strategy, of involving all centres matching our criteria for excellence, and enabling them to contribute to tasks, and domains, and to our mission and the vision.

Policy on conflict of interest lead by RUMC - [D.5]
Type: Document, reports...
Published on: 18/05/2018

Conflict of Interest regarding clinical guidelines, patient pathways, and clinical decision making tools
Cooperation agreement lead by RUMC - [D.6]
Type: Document, reports...
Published on: 18/05/2018

The Terms of Reference will function as cooperation agreement between the coordinator and Full Members. Associated partners will sign a separate cooperation agreement.
Process for membership renewal and access new members and affiliated partners lead by RUMC - [D.7]
Type: Document, reports...
Published on: 18/05/2018

The Network has a defined strategy for integrating new Members approved by the ERN Board of Member States and Affiliated Partners designated by the Competent National Authorities.
GENTURIS handbook lead by RUMC - [D.8]
Type: Document, reports...
Published on: 18/05/2018

GENTURIS handbook, including templates for progress/ activity reports, evaluation reports, meetings etc.
GENTURIS GB/ EC/ NCB/ RB meeting lead by RUMC - [D.9]
Type: Other
Published on: 18/05/2018

Two meetings will take place in year 1, one preceding the ESHG meeting on 27 May 2017 in Copenhagen, Denmark, and a 2-day meeting in Fall 2017 at Schiphol Airport, The Netherlands. The first meeting w...
Two meetings will take place in year 1, one preceding the ESHG meeting on 27 May 2017 in Copenhagen, Denmark, and a 2-day meeting in Fall 2017 at Schiphol Airport, The Netherlands. The first meeting will be attenced by those members registered for the ESHG, the second meeting by all GENTURIS members.
Evaluation report lead by RUMC - [D.10]
Type: Document, reports...
Published on: 18/05/2018

Evaluation report (including Evaluation reports per Task Force = WP)
Report Stakeholder consultation lead by RUMC - [D.12]
Type: Document, reports...
Published on: 18/05/2018

Report on Stakeholders analysis and field consultation
Board approved patient pathways lead by RUMC - [D.13]
Type: Document, reports...
Published on: 18/05/2018

Identify existing patient pathways for genturis including timelines
Report on appraisal of best practices lead by RUMC - [D.14]
Type: Document, reports...
Published on: 18/05/2018

Evaluate appropriateness of established patient pathways and make quality improvements
Report on issues regarding cross-border healthcare lead by RUMC - [D.15]
Type: Document, reports...
Published on: 18/05/2018

Report on issues regarding cross-border healthcare - general and genturis specific
List of GENTURIS performance and outcome indicators, professional standards, HCP criteria lead by RUMC - [D.16]
Type: Document, reports...
Published on: 18/05/2018

List of GENTURIS performance and outcome indicators, professional standards, HCP criteria
Quality and safety framework lead by RUMC - [D.17]
Type: Document, reports...
Published on: 18/05/2018

Identify standards, accreditation and certification (local, national, international) for quality and safety of HC specific for genturis, e.g. for germline genetic testing.
Gap analysis methodology lead by RUMC - [D.18]
Type: Document, reports...
Published on: 18/05/2018

A gap analysis methodology to what needs to be developed in education and training
Annual Education Work plan lead by RUMC - [D.19]
Type: Document, reports...
Published on: 18/05/2018

A Work plan describing:
Target groups e.g. among society, patients, health care providers and scientific groups.
Education and training goals per target group.
Existing education and traíning mater...
A Work plan describing:
Target groups e.g. among society, patients, health care providers and scientific groups.
Education and training goals per target group.
Existing education and traíning materials, projects, activitíes etc.

Strategic Research Plan lead by RUMC - [D.20]
Type: Document, reports...
Published on: 18/05/2018

The Plan describes the identification of research gaps and activities to fulfil these gaps.
Contribute to ERN-wide portal for use of and contribution to resources (information, data and samples) lead by RUMC - [D.21]
Type: Websites, patent filling, videos etc
Published on: 18/05/2018

Listing available resources and (ICT) tools.
GENTURIS strategy for a broad patient engagement lead by RUMC - [D.22]
Type: Document, reports...
Published on: 18/05/2018

Identification of mechanisms/ best practices to incorporate voice and opinion of patients and families, and all relevant patient associations across Europe
Rules of Procedure and Entrance Pathways for Affiliated Partners lead by RUMC - [D.25]
Type: Document, reports...
Published on: 18/05/2018

Description of Rules of Procedure and Entrance Pathways for Affiliated Partners
Board terms of reference lead by RUMC - [D.1]
Type: Document, reports...
Published on: 18/07/2017

The Board Terms of Reference decribe a.o. the governance structure, responsibilities of the committees and financial provisions.
Communication and dissemination plan lead by RUMC - [D.23]
Type: Document, reports...
Published on: 18/07/2017

Establish communication tools, including website and develop a communication and dissemination plan.
Website lead by RUMC - [D.24]
Type: Websites, patent filling, videos etc
Published on: 18/07/2017

A public website about ERN GENTURIS for the lay public.