European Reference Networks Assessment
ACSA, an Independent Assessment Body
The Andalusian Agency for Healthcare Quality is an Independent Assessment Body (IAB) belonging to the assessment project of the European Reference Networks for Rare Diseases. Its function is to assess the centres of the networks which are intended to be officially recognised by the European Commission as European Reference Networks (ERN) for Rare Diseases. ERNs are new structures where specialised centres from different European Union countries are included. Its purpose is the exchange of knowledge and the coordination of assistance on rare diseases requiring a lot of resources and specialised knowledge.
The assessment of these networks developed by independent bodies provides the necessary information to the European Commission in order to grant the official acknowledgement as a Reference Network. For this purpose the Commission, through the Consumers, Health, Agriculture and Food Executive Agency (Chafea), has chosen the Andalusian Agency for Healthcare Quality as a project assessment body. The Agency competed against other European renowned assessment bodies to achieve this function, getting the highest score (95 out of 100) in the calls for proposals. Its candidacy has been supported by the Spanish Federation for Rare Diseases (Federación Española de Enfermedades Raras, FEDER).
ACSA assessed 23 networks which have asked for this acknowledgement. These networks are composed of 931 units belonging to 370 hospitals from 26 Member States of the European Union. They are working on cancer, genetics, oncohematology, neurodegenerative diseases, paediatric pathologies, metabolopathies, among others. ACSA relied on a team of assessors composed of 72 experts on rare diseases from 16 European countries.
These assessors visited the centres; checked the documentation provided by the networks; and made the assessment reports required by the European Commission in order to determine the acknowledgement of a network as an European Reference Network.
Access for Assessors
ERN Assessment Tool
Would you like to take part in this exciting venture?
If you have a profile as a researcher of rare or low prevalence and complex diseases or conditions, previous experience in international assessments and excellent English skills, you could be the professional we are looking for.
ERN Assessor Training
ERNs, within the Directive of the European Union on patients’ rights in cross-border healthcare, could be used as research and information centres for rare diseases affecting citizens from different EU countries. They have to ensure the access to the necessary treatments regardless the patient’s Member State of origin. The European Reference Networks with shared knowledge and resources are intended to concentrate European countries efforts in order to offer a more specialised healthcare.
Rare diseases, also known as low-prevalence diseases, are those with a little impact on the population, affecting no more than 5 inhabitants per 10,000. In spite of that, because of the existence of nearly 7,000 rare diseases, affected people represent 7% of the global population, according to the World Health Organisation (WHO). It is estimated that more than 3 millions of people in Spain and 27 millions in Europe have a rare disease.