The RENAPE observational registry: rationale and framework of the rare peritoneal tumors French patient registry.
Fiche publication
Date publication
février 2017
Journal
Orphanet journal of rare diseases
Auteurs
Membres identifiés du Cancéropôle Est :
Pr BIBEAU Frédéric
Tous les auteurs :
Villeneuve L, Passot G, Glehen O, Isaac S, Bibeau F, Rousset P, Gilly FN,
Lien Pubmed
Résumé
Rare peritoneal cancers represent complex clinical situations requiring a specific and multidisciplinary management. Because of their rarity, lack of awareness and knowledge often leads to diagnostic delays and misdiagnosis. And patients are not systematically referred to expert centers as they should be. Clinicians and researchers also face unique challenges with these rare cancers, because it is hard to conduct adequately powered, controlled trials in such small patient population. This is how an observational patient registry constitutes a key instrument for the development of epidemiological and clinical research in the field of these rare cancers. It is the appropriate tool to pool scarce data for epidemiological research and to assess the impact of diagnostic and therapeutic strategies. We aimed to provide the outlines and the framework of the RENAPE observational registry and share our experience in the establishment of a national patient registry.
Mots clés
Patient registry, Peritoneal mesothelioma, Pseudomyxoma peritonei, Rare cancer network, Rare peritoneal tumor
Référence
Orphanet J Rare Dis. 2017 02 17;12(1):37