Work Packages

WP1

Networking of expert centres

Objectives

To analyse the ethical and legal issues in each European country for the management of patients and samples for diagnostic purposes.
To define the criteria that an expert centre has to fulfill in order to be included in the European Reference Network of Expert Centres in Rare Anaemias.
To create a European Reference Network of Expert Centres in Rare Anaemias

Deliverables

Legal and ethical items: questionnaire to be sent to centres, and scheme for national reports.
Pan-European comparative analysis of ethical and legal framework for referral of patients and samples.
Legal and ethical report.
White Book for the creation of the European Reference Network of Expert Centres in rare anaemias.

WP2

Quality of patient care

Objectives

To improve the quality of laboratory data on rare anaemias.
To facilitate the participation of expert centres in external quality assurance.
To provide educational external quality assurance schemes exercises.
To prioritise the preparation of guidelines for the laboratory diagnosis of rare anaemias.
To develop a European registry of rare anaemias.

Deliverables

Questionnaire to survey the available accredited external quality assurance schemes relevant to the rare anaemias.
Comprehensive catalogue of available external quality assessment.
Guidelines for the laboratory diagnosis of rare anaemias.
Protocol for the development of a European Registry of rare anaemias.
Reports on epidemiological data and educational external quality assurance schemes results.

WP3

Education and training

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. These will be led by: the ENERCA website (www.enerca.org), the European School of Haematology (ESH), the European Haematology Association (EHA) and the International Society of Haematology (ISH), and the World Health Organization (WHO). For patients and their families this will be done in close collaboration with the Thalassaemia International Federation (TIF).

Deliverables

Report on the training courses:
- Thalassaemia and other haemoglobin disorders.
- Very rare red blood cell disorders: diagnosis of membrane defects, enzymopathies, congenital dyserythropoietic anaemias (CDA) and other rare red blood cell diseases.
- Constitutional iron disorders leading to chronic anaemia.
Conferences on haemoglobinopathies, RBC membrane and enzyme pathologies for health professionals and patients. The sessions will be recorded and distributed in video format.

WP4

Public health issus and management of patients with sickle cell disorders

Objectives

To define the technical criteria necessary to become a sickle cell disease expert centre and to identify the European expert centres.
To promote collaboration in the epidemiological registry of patients with sickle cell disease throughout Europe; to set up a programme for epidemiological surveillance.
To prepare guidelines and recommendations on prevention, diagnosis and treatment, if feasible.
To improve the knowledge of sickle cell disease among professionals, patients and patients associations.

Deliverables

Standards for the clinical care of children and adults with sickle cell disease; definition of facilities needed to assume that clinical care.
Picture of the Sickle Cell Disease expert centres existing in Europe and the facilities available at those centres.
Guidelines on: neonatal screening, prenatal screening and antenatal diagnosis; follow-up of children and adult patients with sickle cell disease; management of transfusions; acute events; and pregnancy.
Interactive CD/e-learning system on sickle cell disease for professionals, and on prevention for the public.

WP5

Public health issues and management of patients with thalassaemia

Objectives

To define the technical criteria necessary to become a thalassaemia expert centre and to identify the European expert centres.
To define the indicators and to collect data for establishing epidemiological mapping and registry of patients affected by thalassaemia throughout Europe.
Guidelines and recommendations on prevention, diagnosis and treatment of thalassaemia.
To improve the knowledge of thalassaemia among health professionals through educational courses and e-learning resources in collaboration with WP3, and among patients and society in general, through educational material and by promoting relations with patients associations.

Deliverables

Enquiry based on the consensus criteria included in the White Book: technical, legal and ethical criteria necessary to become a thalassaemia expert centre. Picture of the thalassaemia expert centres that exist in Europe and their facilities.
Guidelines on prenatal screening, antenatal diagnosis, genetic counselling and clinical management of thalassaemia.
Educational material for patients with thalassaemia.
Report on twinning and collaborative research initiatives.

WP6

Public health issues and management of patients widht very rare anaemias

Objectives

To define the technical criteria necessary to become a Very Rare Anaemia expert centre and to identify the European expert centres.
To promote collaboration in the epidemiological registry of patients with rare anaemias.
To enable clinicians to rapidly identify the defects of red cells and their precursor cells underlying the Very Rare Anaemias, and promote the appropriate treatment.
To support access of all citizens of the European Union Member States to timely diagnosis and treatment, and the exchange of best practice for patients groups.

Deliverables

Enquiry based on the consensus criteria included in the White Book: technical, legal and ethical criteria necessary to become a Very Rare Anaemias expert centre.
Picture of the European Very Rare Anaemias expert centres and their facilities.
Guideline on the strategies to recognise and confirm the exact diagnosis of Very Rare Anaemias and recommendations for management.
Educational material for patients.
Reports on the harmonisation of procedures for diagnosis, treatment and follow-up of patients with Very Rare Anaemias and the results of research cooperation.

WP7

Evaluation of the project

Monitoring the general management of the Project and evaluating its progress; that is to say, the achievement of objectives, the outcomes and the impact of the Project’s results on the improvement in the health service of patients with rare anaemias, and on the health services providers,authorities, industry and any other stakeholders.

Evaluation programme for detecting partial progress failures or weak points in order to implement corrective measures.

WP8

Dissemination of the results, and future sustainability of the project

To get the critical mass of interest necessary for the project’s success.
To organise two European Symposiums on Rare Anaemias.

To consolidate the ENERCA website and its services.
To assure Project sustainability after 2012.

WP9

Coordination of the project

Project management, quality assurance and assessment of progress and results.

To guarantee compliance with the work plan and to achieve real coordination.

Enerca is a project in the Health Programme 2008 of the European Commission.