TY - JOUR
T1 - The Italian registry for hypertrophic cardiomyopathy
T2 - A nationwide survey
AU - Cecchi, Franco
AU - Olivotto, Iacopo
AU - Betocchi, Sandro
AU - Rapezzi, Claudio
AU - Conte, Maria Rosa
AU - Sinagra, Gianfranco
AU - Zachara, Elisabetta
AU - Gavazzi, Antonello
AU - Rordorf, Roberto
AU - Carnemolla, Gianfranco
AU - Porcu, Maurizio
AU - Nistri, Stefano
AU - Gruppillo, Paolo
AU - Giampaoli, Simona
PY - 2005/11
Y1 - 2005/11
N2 - Background: National registries are advocated as instrumental to the solution of rarity-related problems for patients with hypertrophic cardiomyopathy (HCM), including limited access to advanced treatment options. Thus, an Italian Registry for HCM was created to assess the clinical profile and the level of care nationwide of patients with HCM. Methods: Cardiology centers over the national territory were recruited to provide clinical data of all patients with HCM ever seen at each institution. The enrollment period was from May 2000 to May 2002. Results: The registry enrolled 1677 patients from 40 institutions. Most (69%) were followed at referral centers, whereas 31% were from community centers with intermediate-low patient flow. Patients diagnosed after routine medical examinations or familial screenings were 39%. Most patients were male (62%), in their fourth to sixth decade of life, and in New York Heart Association class I to II (89%); 24% had resting left ventricular obstruction and 18% had atrial fibrillation. During a 9.7-year average follow-up, cardiovascular mortality was 1%/y, mostly because of heart failure, with no significant change over the last 3 decades; sudden death was less common (0.4%/y). Only 4% of patients received a defibrillator; 14% of the 401 patients with LV outflow obstruction underwent invasive relief of obstruction; and
AB - Background: National registries are advocated as instrumental to the solution of rarity-related problems for patients with hypertrophic cardiomyopathy (HCM), including limited access to advanced treatment options. Thus, an Italian Registry for HCM was created to assess the clinical profile and the level of care nationwide of patients with HCM. Methods: Cardiology centers over the national territory were recruited to provide clinical data of all patients with HCM ever seen at each institution. The enrollment period was from May 2000 to May 2002. Results: The registry enrolled 1677 patients from 40 institutions. Most (69%) were followed at referral centers, whereas 31% were from community centers with intermediate-low patient flow. Patients diagnosed after routine medical examinations or familial screenings were 39%. Most patients were male (62%), in their fourth to sixth decade of life, and in New York Heart Association class I to II (89%); 24% had resting left ventricular obstruction and 18% had atrial fibrillation. During a 9.7-year average follow-up, cardiovascular mortality was 1%/y, mostly because of heart failure, with no significant change over the last 3 decades; sudden death was less common (0.4%/y). Only 4% of patients received a defibrillator; 14% of the 401 patients with LV outflow obstruction underwent invasive relief of obstruction; and
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U2 - 10.1016/j.ahj.2005.01.005
DO - 10.1016/j.ahj.2005.01.005
M3 - Article
C2 - 16290970
AN - SCOPUS:27744467524
VL - 150
SP - 947
EP - 954
JO - American Heart Journal
JF - American Heart Journal
SN - 0002-8703
IS - 5
ER -