- There is insufficient implementation of comprehensive data collection and analysis systems for rare anaemias. Even for those more prevalent as haemoglobinopathies, which are today the
most common genetic disorder in Europe, there are poor data on their precise prevalence, overall burden and trends.
- Inventory of expert centres and epidemiological figures will provide ENERCA with comparable data at EU level allowing the promotion of specific actions for primary prevention of rare
anaemias in such European countries where its prevalence might be higher than expected from previous estimations.
For epidemiological surveillance
- Study of the requirements and EU standards and directives for electronic health records.
- Create a pan-European interoperable electronic Registry Rare Anaemias and other epidemiological health records ensuring interoperability and patient-centred philosophy.
- Develop an interoperable, extendible and functional model of a database which will enable entering of certified medical data from the available sources.
- Make it available on-line through an specific web portal.
- Set up your own electronic registry of patients, following the EC requirement for centres of expertise, by downloading the application and adapting it to your needs.
- Share your information in a harmonize way with your colleagues and other experts in Europe.
- Contribute to the European registry and have access to relevant clinical information in a timely manner.
- Get informed and involved in several European initiatives that will facilitate the provision of care.