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The CARMEN-France registry is a prospective, multicenter registry in France including adult patients with a new diagnosis of immune thrombocytopenia or of autoimmune immune hemolytic anemia (2402 patients included in December 31, 2023). The recording of clinical, biological and treatment data allows detailed epidemiological and pharmacoepidemiological real-world studies. This review summarizes the CARMEN-France registry protocol, gives examples of studies conducted in the registry, and indicates future directions such as inclusion of patient reported outcomes, linkage with the French national health insurance database and linkage with other registries in Europe., (Copyright © 2024 The Author(s). Published by Elsevier Masson SAS.. All rights reserved.)

Résumé: Introduction: Le syndrome coronarien aigu ST+ (SCA ST+) reste une cause de morbi-mortalité importante en France, directement corrélée au délai de prise en charge du patient et à la précocité de la revascularisation. Or le délai de reperfusion est lié au parcours du patient jusqu’à la revascularisation. Méthodes: Pour évaluer les pratiques départementales, nous avons réalisé une étude rétrospective, monocentrique sur les SCA ST+ pris en charge sur quatre années (2008–2011) au CHD de La Roche-sur-Yon en comparant les délais de reperfusion dans deux groupes : les patients ayant emprunté la filière recommandée=filière Directe (Appel 15->Smur->coronarographie ou soins intensifs) et les patients ayant emprunté une autre filière=filière Longue. Résultats: Sur 838 patients ayant présenté un SCA ST+, 356 (soit 42,5 %) ont emprunté la filière recommandée. Le délai moyen de reperfusion dans le groupe filière Directe est de 4,28heures (± 3,12) alors qu’il est de 6,17heures (± 4,82) dans le groupe filière Longue. Il y a une différence significative de 1,9 heures (p <0,001) entre les deux groupes. Sur 186 patients ayant consulté un médecin généraliste, 40,3 % des patients n’ont pas été pris en charge par le Samu. Conclusion: Ces résultats doivent conduire à une amélioration des pratiques, une poursuite de la formation médicale continue auprès de tous les intervenants de la filière et à une information des patients pour raccourcir au maximum les délais de reperfusion. [ABSTRACT FROM AUTHOR]

Background: Registries, a cornerstone of contemporary medicine, frequently suffer from incomplete documentation and losses to follow-up. By linking data to a single-payer national claims database, national registries may be enriched and the quality enhanced., Aims: To explore the value of data from the French Système National des Données de Santé (SNDS) as a resource to enhance the quality of registries when combined with data from electronic case report forms, and to assess the power to minimize data gaps and losses to follow-up., Methods: A probabilistic algorithm was developed to link and match records in the SNDS with patient data from the electronic case report forms of two registries on transcatheter aortic valve implantation: FRANCE-2 and FRANCE-TAVI. The algorithm created patient profiles from transcatheter aortic valve implantation procedures in the SNDS, matching them as closely as possible to the profiles in the registry databases. The objective was to achieve 90% linkage of the populations. The linked database was analysed for completeness and loss to follow-up. For validation, mortality curves for the linked registry cohorts were compared with those for the original populations., Results: A total of 34,397 unique registries entries were identified, and 89.9% of patients in the SNDS could be linked. Rates of losses to follow-up over 2 years were 1.0% in the linked FRANCE-TAVI population compared with 40.3% based on electronic case report form documentation. For FRANCE-2, 3-year rates of losses to follow-up were 1.7% and 6.1%, respectively. Mortality curves for populations based on SNDS and electronic case report form data were practically superimposable., Conclusions: Linking data from a single-payer national claims database to national registries using a probabilistic approach is feasible and can close data gaps and practically abolish losses to follow-up in the registry population., (Copyright © 2020 Elsevier Masson SAS. All rights reserved.)

Abstract: The major development of interventional cardiology during the last 20 years has been possible thanks to technological evolutions, and mainly to the introduction of stent technology (with or without drugs). From data obtained in multiple registries held in France. it has been possible to study the numerical evolution of the coronary angioplasty. From 1991 to 2006. the total number of coronary angiograms has been multiplied by 2, and the total number of coronary angioplasties has been multiplied by 4. with a rate of coronary stenting of 95% (50% of them being drug eluting ones) in 2006. In comparison with Europe, with 1830 coronary angioplasties / million of inhabitants. France is in the highest group of European countries: but large differences are registered between European countries. [Copyright &y& Elsevier]

This short review highlights five studies published in 2012 in the field of Charcot-Marie-Tooth disease (CMT) and transthyretin familial amyloid neuropathies (TTR-FAN). Regarding CMT, an Australian pediatric study shows the high prevalence of impaired speech perception and hearing disability in children with CMT1 or CMT2 with normal or near normal audiometry (Rance et al., 2012). In a second study, the clinical and electrophysiological characteristics of 14 patients with CMT4C due to mutations in SH3TC2 gene are described (Yger et al., 2012). The 3 clinical hallmarks of CMT4C patients in this French cohort are the high prevalence of scoliosis, the proximal motor weakness and the cranial nerves involvement. Concerning TTR-FAN, the first data from French and international registries are reported (Adams et al., 2012; Coelho et al., 2013) and a phase II trial describes the results of taurourodeoxycholic acid and doxycycline treatment (Obici et al., 2012)., (Copyright © 2013 Elsevier Masson SAS. All rights reserved.)