Titre : | Rare disease patient registries |
Auteurs : | Collectif |
Type de document : | Reco PNDS |
Editeur : | EURORDIS, 2011 |
Pages : | 2 p |
Langues: | Anglais |
Mots-clés : | Europe (géographique) ; maladies rares ; registre de malades |
Résumé : |
Patient registries are on-going, exhaustive systems of data collection of patients with the same disease(s) from a geographically defined population over an extended period of time. By collecting patient data, patient registries constitute key instruments in supporting health service planning, increasing knowledge on rare diseases (RD) and support research by pooling data in order to achieve a sufficient sample size for epidemiological research, clinical research, surveillance of drugs used off-label, and post-marketing orphan drug surveillance. Patient registries are only one type of database collecting information on RD patients used to ask or answer research questions. Other types of databases include hospital databases, ad hoc surveys and observational studies, repositories of cases, and patient association databases which despite al having the purpose of collecting patient data, have different characteristics and applications.
Although very thorough and effective research infrastructures, patient registries are tools that require significant time and human resources as well as financial investment and sustainability. As such, collaborative efforts are paramount at the regional, national and international levels to establish, manage and derive outcomes from patient registries. |
Lien associé : |
Lien vers le texte complet sur le site EURORDIS Site Internet EURORDIS, Rare Diseases Europe |