Registry following adults and children with hypertrophic cardiomyopathy in Russia
Follows adults and children with hypertrophic cardiomyopathy to learn how the disease progresses.
Plain-language title generated from the registry record
Registry title: ReGistry of hypeRtrophic cArDIomyopathy: Regional fEatures, geNeTics and Course
Key facts
- Where
- Moscow, RussiaSee the 2 sites
Where in Russia
- Central State Medical AcademyMoscow, RussiaNo longer taking part
- CGMAMoscow, RussiaNo longer taking part
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- Central State Medical Academy
- Trial code
- NCT07295613
- Record updated
- 19 December 2025
- Original description
This study is envisioned as the very first of its kind in the Russian Federation, aiming to provide a comprehensive characterization of the clinical spectrum and disease burden, focusing on the epidemiology and progression of HCM in the largest cohort of adult and pediatric patients from this region. This registry will help increase knowledge of the epidemiology and prevalence of HCM, ultimately improving diagnosis and management. To assess the feasibility of new interventions, understanding the epidemiological profile of patients with HCM is essential. Clinical characteristics, imaging patterns, and outcomes may vary across different geographic regions. Completing this registry will enhance our understanding of the disease in Russia, and promote measures that modify the natural history of HCMRead full original descriptionShow less
Multicenter Prospective Registry of Patients With Hypertrophic Cardiomyopathy
This study is envisioned as the very first of its kind in the Russian Federation, aiming to provide a comprehensive characterization of the clinical spectrum and disease burden, focusing on the epidemiology and progression of HCM in the largest cohort of adult and pediatric patients from this region. This registry will help increase knowledge of the epidemiology and prevalence of HCM, ultimately improving diagnosis and management. To assess the feasibility of new interventions, understanding the epidemiological profile of patients with HCM is essential. Clinical characteristics, imaging patterns, and outcomes may vary across different geographic regions. Completing this registry will enhance our understanding of the disease in Russia, and promote measures that modify the natural history of HCM
Inclusion: Any age; Signed informed consent form (ICF) for participation in the study, including genetic testing; Meets the criteria for HCM HCM Criteria for Probands ≥ 18 Years Based on ECHO or CMR; End-diastolic LV wall thickness ≥ 15mm in any segment of the LV HCM Criteria for Probands ≥ 18 Years with Arterial Hypertension; 1st degree of AH: The same ECHO/CMR criteria as patients without AH; 2nd and 3rd degrees of AH:; Asymmetric LV hypertrophy: the ratio of septum / LV PW ≥ 1.5 or apical HCM; If asymmetry < 1.5, the wall thickness must be ≥ 20mm; For all patients with arterial hypertension, the presence of at least one of the following ECG changes is obligatory:; Pathological "dagger" Q wave; T-wave inversion ≥ 3mm in ≥ 2 adjacent leads; Poor R progression / QS / RV1 > RV2 < RV3 in V1-V4; HCM Criteria for First-degree Relatives ≥ 18 Years Based on ECHO or CMR and ECG:; End-diastolic LV wall thickness ≥ 13mm in any segment and/or ECG changes in the absence of CAD, such as (at least one of the following):; Quantitative signs of LV hypertrophy* + repolarization changes; T wave inversions in at least 2 adjacent leads: ≥ 3mm in V3-V6, I, aVL or ≥ 5mm in II, III, aVF; Pathological Q waves (> 25% of R) in at least 2 adjacent leads: II, III, aVF (in the absence of left anterior hemiblock) or V1-V4, or I, aVL, V5-V6; *Presence at least one of the following:; Sokolow-Lyon index (S in V1 + R in V5 or V6) > 35mm; R or S in limb leads ≥ 20mm; S in V1 or V2 ≥ 30mm; R in V5 or V6 ≥ 30mm HCM Criteria for Children and Adolescents < 18 Years; End-diastolic LV wall thickness in any segment > 2.5 standard deviations (> 2.5 z-score) above the norms for the index gender, age and weight (or body surface area) in asymptomatic children/adolescents without a family history of HCM; End-diastolic LV wall thickness in any segment > 2.0 standard deviations (> 2.0 z-score) above the norms for the index gender, age and weight (or body surface area) in children/adolescents with a family history of HCM or a positive genetic test.
Exclusion: Uncontrolled arterial hypertension of 2nd - 3rd degree with mild/moderate (\< 20mm) or symmetric LV hypertrophy or a "normal" ECG; Hemodynamically significant congenital or acquired valve heart disease; Established diagnosis of metabolic, infiltrative, endocrine, or other diseases known as "phenocopies of HCM".