Recommendation of the Council of 8 June 2009 on an action in the field of rare diseases (2009 / C 151/02), the responsibility of Member States to ensure that these diseases have an appropriate coding and traceability at all health information systems to promote the appropriate recognition in national health care systems and actively developing a dynamic inventory of rare diseases in the European Union based on the International Classification of Diseases while respecting national procedures contribute.
In this regard the strategy for our national health system, updated in June 2014, acknowledges the need to appropriately estimate the incidence and prevalence of each disease as well as to improve knowledge about the natural history of rare diseases or little Frequently in order to adapt the actions in health care and be able to better monitor them. One objective of this strategy is to obtain the necessary epidemiological information to enable the development of social policy, health and research.
In most regions have been creating in recent years, records or information systems of rare diseases that they have shaped together with the activities from the Research Institute for Rare Diseases at the Institute of Health Carlos III, the Spanish network of rare disease registries (SpainRDR ), so it is necessary to establish rules to allow adequate collaboration and coordination.
The royal decree should therefore create and regulate the content and characteristics of that registration as well as the transfer of the necessary information to the autonomous communities also integrated into the Health Information System of the National Health System provided for in Article 53 of Law 16/2003 of 28 May, of cohesion and quality of the National Health System, in order to ensure the availability of information and mutual communication between health administrations
Noting that the necessary identification and value indicators provide health planning and management of these diseases and thus anticipate and adapt aspects of actions necessary for better prevention, treatment and monitoring of them. The evaluation and monitoring of these activities will in turn establish comparative indicators between communities and other countries and eventually lead and facilitate research about activity.
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