The development of specialised services for rare congenital anaemias cannot progress without epidemiological information being made available to health authorities. Many haematology centres across Europe maintain a patient register either as a local hospital register or as part of a network.
In developing the e-ENERCA registry, a Working Package coordinated by the Thalassaemia International Federation (TIF), it is necessary to know what already exists and whether collaboration is possible so that pan-European epidemiological information can be collected. The purpose of this survey is limited to identifying the existing registries so that the possibility of further collaboration between them can be explored.
We would be grateful if you could take a few minutes to respond to this online questionnaire which will assist us in our initial task.