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e-ENERCA Work Packages

WP1

Coordination of the project

Objectives

  • 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

Tasks

  • Monitoring and managing of overall Project’s performance
  • Project’s Meetings
  • Project reporting

WP2

Dissemination of the project

Objectives

  • 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.

Tasks

  • 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.

WP3

Evaluation of the project

Objectives

  • 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.

Tasks

  • Design of an Evaluation plan.
  • Monitoring process.
  • Assessment of the new e-health services.
  • Evaluation report.

WP4

European epidemiological surveillance for major rare anaemias

Objectives

  • Creating a pan-European interoperable electronic Registry for major Rare Anaemias and other epidemiological health records.

Tasks

  • 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.

WP5

Continuing medical education on rare anaemias and e-learning

Objectives

  • 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.

Tasks

  • Organization of training courses.
  • E-learning activities on rare anaemias.

WP6

Expert advice: Tele-expertise and Telemedicine services for rare anaemias

Objectives

  • Creating a tele-expertise network to share knowledge and to perform remote diagnosis and patient management.

Tasks

  • 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.

WP7

Network sustainability

Objectives

  • Exploring the mechanisms for the future sustainability of the network.

Tasks

  • 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.

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Co-funded by the Health Programme of the European Union.