Filter on [PROGRAMME PRIORITY=3HP.1.1.4.]

3rd Health Programme (2014-2020)
ERN-PAEDCAN Partner: Paediatric Rare Tumours Network - European Registry [PARTNER]
National registries dedicated to collect epidemiological, clinical and treatment data of children and adolescents with very rare tumours (VRT) exist in four European countries: France, Germany (includ...
National registries dedicated to collect epidemiological, clinical and treatment data of children and adolescents with very rare tumours (VRT) exist in four European countries: France, Germany (including Austrian patients), Italy and Poland. Aim of this project is the creation of a Paediatric rare tumour European Registry (PARTNER) linking the existing national registries.
PARTNER will be also linked to a virtual consultation system, a dedicated website and the elaboration of diagnostic/treatment recommendations.
Strategic relevance
The value of this project is based on the European wide gathering of information on treatment of VRT and the provision of this information to experts generating new guidance recommendations for daily practice. The platform that will be created using innovative IT tools to link the existing databases will enhance European collaboration and facilitate cross border access to dedicated expertise.
Methods and means
The first step will be a process of harmonization of the national registries, (identification of the VRT of interest, selection of variables, use of common definitions and procedures for data management) and discussions of the regulatory issues relevant for the different countries. PARTNER will be then created and linked to the existing registries through the adoption of EUPID, a privacy-preserving, secure and versatile system for pseudonymised patient registration and record linkage. Standard of care recommendations will be also elaborated by a dedicated Working Group. LHEAR countries will be involved in the whole of process creating the basis for a larger EU registry and facilitating recommendations dissemination.
Expected outcome
This project will lead to the creation of a comprehensive EU platform that can be easily accessed by EU Health care providers and will ultimately result in improved patients’ care and reduction of the existing inequalities in cancer outcome across EU member states.
Start date: 01/01/2018 - End date: 30/06/2021

Call: Rare diseases - support for New Registries
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes...
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes the creation of reference networks (in compliance with point 4.1), Union wide information databases and registries for rare diseases based on common criteria.
3rd Health Programme (2014-2020)
ERKNet Registry for Rare Kidney Diseases [ERK-REG]
Designed to meet the Third Health Programme objective to facilitate access to better and safer healthcare for EU citizens, the ERKNet Registry project aims to establish an online platform for the coll...
Designed to meet the Third Health Programme objective to facilitate access to better and safer healthcare for EU citizens, the ERKNet Registry project aims to establish an online platform for the collection of information relevant to patient health and clinical research within the framework of the European Rare Kidney Disease Reference Network (ERKNet).
This will be accomplished by the construction and implementation of a single core registry encompassing all rare kidney diseases in pediatric and adult patients.
The ERKNet Registry will collect at annual intervals (1) a common data set providing basic information about clinical, histopathological and genetic diagnosis, patient status, current kidney function and treatment modality and available biospecimens, and (2) a selected disease-specific set of key performance and outcome indicators. The latter will be defined by the ERKNet workgroups in a structured consensus-building process involving evidence-based guideline review and an iterative Delphi surveys among internal and external experts.
The Registry will contain an automated statistics and benchmarking functionality to allow continuous monitoring and benchmarking of treatment quality, guideline adherence and patient outcomes.
Existing disease- and treatment specific registries used by a major fraction of ERKNet members will be linked to the ERKNet Core Registry to allow data transmission and avoid the need of double entries. A stringent data protection policy will be applied in full compliance with the EU directive and regulation as well as national regulations on patient privacy and data protection, including central peudonymisation with separate storage of medical and patient identifying information.
In summary, we are proposing an innovative Web-based registry solution with a patient-oriented focus on continuous healthcare quality inmprovement by automated performance monitoring and Network wide benchmarking.
Start date: 01/01/2018 - End date: 31/12/2020

Call: Rare diseases - support for New Registries
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes...
Topic: 4.2 Support Member States, patient organisations and stakeholders by coordinated action at Union level in order to effectively help patients affected by rare diseases. This includes the creation of reference networks (in compliance with point 4.1), Union wide information databases and registries for rare diseases based on common criteria.
3rd Health Programme (2014-2020)
Codification for Rare Diseases [RDCODE]
The objective of this project is to support Member States in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). The implemen...
The objective of this project is to support Member States in improving gathering information on rare diseases by implementation of Orphacodes (rare diseases specific codification system). The implementation process will be guided by the "Standard procedure and guide for the coding with Orphacodes" and the "Specification and implementation manual of the Master file" both developed in the frame of the current RD-ACTION Joint Action. The aim of the Orphacode project is to promote the use of the Orphanet nomenclature for implementation into routine coding systems. This enables a standardised and consistent level of information to be shared at European level. Starting with countries that have no systematic implementation of the Orpha codification yet, but that are actively committed already in doing so, this project will provide a sufficient real-world implementation experience to be captured by other countries in the future. Outcomes are: 1. Development of comprehensive rules of use and meta-data documentation for Orphacodes use in clinical health information and other applications that has been developed and rigorously tested in health care systems from EC countries of varying sizes, health information systems, and languages 2. An electronic repository will be created to house this information at the Orphanet website, linking to Orphadata, to include: guidance for use of Orphacodes; teaching and training documents used in health care systems; tools for export of Orphacodes to federated data exploitation at the EC level. 3. Through collaboration of RDCODE partners and invited collaboration with key stakeholders at workshops, effective implementation will be achieved at implementing countries as well as momentum will be developed in other jurisdictions to implement Orphacodes in widespread use to accurately measure the impact of rare diseases in the EC.
Start date: 01/01/2019 - End date: 31/12/2021

Call: Call for Proposals for Projects 2018
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources o...
Topic: 4.1 Support the establishment of a system of European reference networks for patients with conditions requiring highly specialised care and a particular concentration of resources or expertise, as in the case of rare diseases, on the basis of criteria to be established under Directive 2011/24/EU.