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The e-ENERCA project is an EU funded project with the objective of improving the diagnosis and care of patients with rare congenital anaemias. These conditions require lifelong follow up and treatment, which over time, due to complications of the disease but also of the treatment, become multi-organ disorders, requiring the involvement of several medical and paramedical specialties.  The development of specialised services however cannot progress without epidemiological information being made available to health authorities. In the case of rare diseases this is particularly important since expertise cannot be made available in every health unit with very small numbers of patients being served. A system of centres of expertise and networks with peripheral services are envisaged in which electronic communications are an essential means to ensure the required level of care.

Many haematology centres across Europe maintain a patient register either as a local hospital register or as part of a network. These registers may be disease specific or include all rare anaemias or all red cell disorders. In developing the e-enerca registry it is necessary to know what already exists and whether collaboration is possible so that pan-European epidemiological information can be collected.

Such an objective requires planning and study concerning interoperability, pooling of data when necessary, using common data sets etc. (see the EUCERD core recommendations on rare disease patient registration and data collection).

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.

https://docs.google.com/forms/d/1vcQWdaFsbDnHvLJRjwoDoyYVR_jCn2ffuKDwNM87UMw/viewform

 


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