The Italian Fabry Disease Cardiovascular Registry (IFDCR).
Eur Heart J Qual Care Clin Outcomes
; 2024 Jun 27.
Article
en En
| MEDLINE
| ID: mdl-38936829
ABSTRACT
AIMS:
The Italian Fabry Disease Cardiovascular Registry (IFDCR) comprises 50 Italian centres with specific expertise in managing cardiovascular manifestations and complications of patients with Fabry disease (FD). The primary aim of the IFDCR is to examine and improve the clinical care and outcomes of patients with FD by addressing several knowledge gaps in the epidemiology, natural history, genotype-phenotype correlations, diagnosis, and management of this condition, with particular focus on cardiovascular manifestations and complications. METHODS ANDRESULTS:
The IFDCR is an international, longitudinal, multicentre, non-interventional, observational study. Consecutive patients aged ≥ 2 years with a diagnosis of FD will be included in the study. The recruitment period consists of two parts the retrospective enrolment period, from January 1981 to December 2023, and the prospective enrolment period, spanning from January 2024 to December 2031. The registry collects baseline and follow-up data, including the enrolment setting, patients' demographics, family history, symptoms, clinical manifestations, electrocardiogram, cardiovascular imaging, laboratory assessment, medical therapy, genetic testing results, and outcomes.CONCLUSIONS:
The IFDCR is a national, multicentre, registry that includes patients with FD. It holds detailed and multiparametric data across the patient pathway and clinical manifestations, acting as a powerful tool for improving the quality of care and conducting high-impact research.
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Bases de datos:
MEDLINE
Idioma:
En
Revista:
Eur Heart J Qual Care Clin Outcomes
Año:
2024
Tipo del documento:
Article
País de afiliación:
Italia