Clinical InvestigationCongestive Heart FailureThe Italian registry for hypertrophic cardiomyopathy: A nationwide survey
Section snippets
The Progetto Cuore
The Italian Registry for HCM is a research initiative implemented as part of the Progetto Cuore (“Heart Project”), a large epidemiologic survey aimed at cardiovascular prevention funded by the Italian Ministry of Health and the National Institute of Health (Istituto Superiore di Sanità, www.cuore.iss.it/eng/index_en.htm). The enrollment period was from May 2000 to May 2002. A direct invitation to participate was made to a large number of cardiology centers nationwide, ranging from tertiary
Participating institutions
Overall, the registry enrolled 1677 patients from 67 Italian provinces, followed at 40 institutions. Of those who were alive at last contact, 93% had been seen within the last 2 years, including 89% within the last 12 months. Most patients (1157, or 69%) were followed at 7 referral institutions with specific interest in HCM (Table I), each following >50 patients, including 4 high-volume centers contributing >150 patients each. At the other end of the spectrum, 13% of the patients were followed
A nationwide survey
The present survey, unprecedented in scope and number of participating institutions, is the result of a nationwide initiative involving 40 cardiological centers and 1677 patients over the entire Italian territory.2 Recent epidemiologic evidence6, 7, 8, 9, 10, 11, 12 suggests a prevalence of HCM of about 1:500 HCM in the general population, that is, about 100 000 patients in Italy. Based on such estimate, our cohort may represent between 1% and 2% of affected individuals in the country. To our
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This study was funded by a grant from the Italian Ministry of Health and the Istituto Superiore di Sanità.