Search

Copyright of Archivos Venezolanos de Puericultura y Pediatría is the property of Sociedad Venezolana de Puericultura y Pediatria and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

In the subject of rare diseases, experience and knowledge is limited. With a rare disease registry, longitudinal data can be added to increase information of them and to improve the quality of medical care and the patient outcome. Registries, unlike randomized controlled trials, provide a source of real-time information to develop guidelines for monitoring and to support patient management. Registries are essential to show the real situation of rare diseases and to establish management goals in order to address the unmet needs of the patients. [ABSTRACT FROM AUTHOR]