e-ENERCA Work Packages
Coordination of the project
- To ensure the effectiveness of Project’s management.
- To facilitate the interaction with EU Commission officers.
- To monitor on-going activities and standards of quality.
- To promote co-operation between the partners
- Monitoring and managing of overall Project’s performance
- Project’s Meetings
- Project reporting
Dissemination of the project
- To create a critical mass of interests necessary for the upgrading of services provided by the experts and expert centres
- Assuring Project’s sustainability.
- To disseminate knowledge and improve the awareness on rare anaemias.
- To facilitate the translation of science from basic and non-clinical research to the clinical practice.
- To facilitate the access to the same high quality health care for patients with rare anaemias, independently from the Member State where they are from.
- To disseminate ENERCA website and its services.
- Project’s dissemination plan, ENERCA leaflet and dissemination material
- ENERCA website as a tool of dissemination: new services and updating (e-Registry (WP4), e-learning (WP5) and Tele-advice (W6)).
- Smart Phones applications developed by e-ENERCA.
- 5th and 6th Edition of ENERCA European Symposium on Rare Anaemias.
- Relations with third parties.
- Public Final Project Report.
Evaluation of the project
- To assess the achievement of the general and specific objectives and outcomes of the project, as well as the impact in both scientific and patient community of the new e-health services for rare anaemia developed.
- Design of an Evaluation plan.
- Monitoring process.
- Assessment of the new e-health services.
- Evaluation report.
European epidemiological surveillance for major rare anaemias
- Creating a pan-European interoperable electronic Registry for major Rare Anaemias and other epidemiological health records.
- Study of the requirements and EU standards and directives for electronic health records.
- Proposal of an interoperable, extendible and functional model of a database which will enable entering of certified medical data from the available sources.
- To build the infrastructure (database and web portal) for the Registry.
Continuing medical education on rare anaemias and e-learning
- To disseminate up-to-date knowledge on rare anaemias to European health professionals, practitioners and patients by establishing collaboration with recognised European organisations, professional education and training activities.
- Health education actions aimed at medical professionals, primary care personnel, patients and their families.
- Organization of training courses.
- E-learning activities on rare anaemias.
Expert advice: Tele-expertise and Telemedicine services for rare anaemias
- Creating a tele-expertise network to share knowledge and to perform remote diagnosis and patient management.
- To promote communication and sharing of clinical knowledge through the exchange of information and professional collaboration.
- To allow professionals to share cases, opinions and comments easily and securely via Internet.
- To facilitate research and education by providing the medical community with a tool that can store a large volume of data and images.
- Exploring the mechanisms for the future sustainability of the network.
- Promotion of the recognition of the European Reference Networks of Expert Centres by Member States.
- Analysis of the impact of the entry into force of the Directive 2011/24/EU on the application of patients’ rights in cross-border healthcare.