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European Reference Network on GEnetic TUmour RIsk Syndromes - GENTURIS [ERN GENTURIS] [768995] - Operating Grant
Coordination and Management by lead RUMC

Start month:1 - End month: 12

All Coordination and Management activities regarding required documents, inclusion of HCPs, organisation of meetings and reporting.
Organisation of Care by lead RUMC

Start month:1 - End month: 12

This Task Force will pursue the following general GENTURIS objectives:
• To contribute to the pooling of knowledge regarding sickness prevention; Sickness prevention is an important aspect of the ...
This Task Force will pursue the following general GENTURIS objectives:
• To contribute to the pooling of knowledge regarding sickness prevention; Sickness prevention is an important aspect of the care for patients with genturis. Genetic screening of healthy relatives and a multidisciplinary and personalized approach towards surveillance and risk-reducing surgery can prevent tumours and complications in healthy relatives and prevent the second primary cancer in affected patients, as these frequently occur in genturis.

To facilitate improvements in diagnosis and the delivery of high-quality, accessible and cost-effective healthcare for all patients with a medical condition requiring a particular concentration of expertise in medical domains where expertise is rare. This objective is central to aim of European Reference Networks in general. This objective will be realized by all Task Forces, but specifically by Task Force Two – Organisation of Care and the specific objectives and activities therein.

To help Member States with an insufficient number of patients with a particular medical condition or lacking technology or expertise to provide highly specialised services of high quality.

Good Practice, guidelines, outcome measures and quality control by lead RUMC

Start month:1 - End month: 12

This Task Force will pursue the following general GENTURIS objective:
To encourage the development of quality and safety benchmarks and to help develop and spread best practice within and outside the ...
This Task Force will pursue the following general GENTURIS objective:
To encourage the development of quality and safety benchmarks and to help develop and spread best practice within and outside the network.

Continuous Education, Training and Development by lead RUMC

Start month:1 - End month: 12

This Task Force will promote the use of standardized continuous education & training programs and tools for society, patients, health care providers and scientific groups. The Task Force will coordina...
This Task Force will promote the use of standardized continuous education & training programs and tools for society, patients, health care providers and scientific groups. The Task Force will coordinate education and training activities initiated by the network.

Research, data registries, biobanking and funding by lead RUMC

Start month:1 - End month: 12

This Task Force will define the research agenda, identify needs and opportunities in a Strategic Research Plan, and
coordinate and facilitate access to information, data and biological samples.
Patient Empowerment, Collaboration, Communication and Dissemination by lead RUMC

Start month:1 - End month: 12

Task Force 6 will focus on incorporating the voice and opinion of patients and families, disseminating GENTURIS output and collaboration with other ERNs.