BACKGROUND: National registries are advocated as instrumental to the solution of rarity-related problems for @entity1 with @entity1121 ( @entity1121 ), including limited access to advanced treatment options. Thus, an Italian Registry for @entity1121 was created to assess the clinical profile and the level of care nationwide of @entity1 with @entity1121 . METHODS: Cardiology centers over the national territory were recruited to provide clinical data of all @entity1 with @entity1121 ever seen at each institution. The enrollment period was from May 2000 to May 2002. RESULTS: The registry enrolled 1677 @entity1 from 40 institutions. Most (69%) were followed at referral centers, whereas 31% were from community centers with intermediate-low @entity1 flow. @entity1 diagnosed after routine medical examinations or familial screenings were 39%. Most @entity1 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 @entity67 and 18% had @entity955 . During a 9.7-year average follow-up, cardiovascular mortality was 1%/y, mostly because of @entity712 , with no significant change over the last 3 decades; @entity944 was less common (0.4%/y). Only 4% of @entity1 received a defibrillator; 14% of the 401 @entity1 with LV outflow obstruction underwent invasive relief of obstruction; and <1% were offered genetic analyses or counseling. CONCLUSIONS: The Italian Registry represents the first comprehensive attempt to evaluate the clinical impact and management of @entity1121 at a national level. Findings underscore the role of screening strategies for an early diagnosis and suggest limited use of the advanced therapeutic options for @entity1121 .

The Italian Registry for XXXX : a nationwide survey.

@entity1 :: ('9606', 'Species') :: ['Patients', 'patients', 'patient'] @entity712 :: ('MESH:D006333', 'Disease') :: ['heart failure'] @entity944 :: ('MESH:D003645', 'Disease') :: ['sudden death'] @entity955 :: ('MESH:D001281', 'Disease') :: ['atrial fibrillation'] @entity67 :: ('MESH:D018754', 'Disease') :: ['ventricular obstruction'] @entity1121 :: ('MESH:D002312', 'Disease') :: ['HCM', 'hypertrophic cardiomyopathy']
@entity1121 :: (MESH:D002312,Disease) :: ['hypertrophic cardiomyopathy']
