The main objective of ENERCA 3 is the establishment of a European Reference Network (ERN) of Expert Centres (EC) in Rare Anaemias (RA). Identify appropriate centres of expertise (Expert Centres) throughout each national territory involved in ENERCA 3 Project is one of its most important goals. The ERN will establish a link between the ECs and will serve as a platform for foster their participation respecting the national competences and rules in regard of their authorisation or recognition. Once established the ERN will be responsible of organize healthcare pathways for patients suffering from rare anaemias through the establishment of cooperation with relevant experts and exchange of professionals and expertise within country or from abroad when necessary. The ECs will include in their plans or strategies the necessary conditions for the diffusion and mobility of expertise and knowledge on order to facilitate the treatment of patients in their proximity. One of the most important tools for ENERCA activities will be the Web site (www.enerca.org), established by ENERCA 1 and consolidated by ENERCA 2. The Website will be also very useful for giving support to the use of information and communication technologies such as telemedicine where it is necessary to ensure distant access to the specific healthcare needed.
All these measures, together with the European Comission will be essential to ensure, through appropriate funding and cooperation mechanisms, a long-term sustainability of infrastructures developed by ENERCA in the field of information, research and health care for rare anaemias.
The methods to be undertaken are focused on: 1) analysis of the legal framework for patient’s referral and samples and/or clinical data exchange between MS, 2) establishment of consensus criteria to be fulfilled by an Expert Centre in RA, 3) consolidation of the existing links between experts in RA in order to promote the harmonization of procedures and to create a European Epidemiological Registry in RA, 4) preparation of guidelines for the clinical care of patients with RA and 5) development of educational and training activities for specialists and other professionals such as workshops, medical courses, e-learning and material distribution for expanding the knowledge of RA to public in general.
The project will be undertaken by 48 partners, 24 associated partners and 24 collaborating partners, covering the majority of MS. Most of the partners have been working together since 2002 and all of them are well known and recognized experts in their respective field. A solid and professional management structure has been created to allow the smooth running of the project, with each WP leader coordinating his/her activities. All partners have expressed their full commitment to the project and will be contributing with the necessary resources. In order to achieve the Project’s goals, six governing transversal Work packages (WP) have been defined and structured, three horizontal: WP1 “Networking of expert centres”; WP2 “Quality of patient care” and WP3 “Education and training” and three focused on public health issues and management of patients with Rare Anaemias (RA) classified into three main categories: WP4 “Sickle Cell Disorders”; WP5: “Thalassaemia” and WP6 “Very rare Anaemias”. Three additional WPs have been also designed according to EC recommendations in order to guarantee Project’s full management in its three fundamental aspects: Evaluation (WP7), Dissemination (WP8) and Coordination (WP9).
The expected results are the following: a) an easy access to expertise in RA to all the European Member States (MS), b) sharing the best practices on diagnostic tools and medical care as well as education and social care in the field of rare anaemias c) the collection of comparable data between MS and epidemiological surveillance of RA and d) adequate teaching and training for health professionals to make them aware of the existence of these diseases and the resources available for their care. e) development of European guidelines on diagnostic tests, population screening while respecting national decisions and competences f) foster the participation of national researchers in research projects on rare anaemias funded at all appropriate levels, including Community level g) promoting the activities performed by patient organizations such as awareness-raising capacity-building and training, exchange of information and best practices, networking outreach to very isolated patients.