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February 28, 2026Open Heart0 citationsOpen Access

Characterising the phenotype and outcomes of cascade-tested relatives of probands with hypertrophic cardiomyopathy

WCWajeeh Raza ChaudhryJBJonathan BergJBJ. Berg

Key Result

Cascade genetically tested relatives with pathogenic sarcomere variants had fewer repeat major adverse cardiac events than genotype positive probands (HR 4.0), but more than genotype negative relatives, during a mean 8.9 year follow up.

Key Points

  • This research aims to characterize the outcomes of relatives identified through cascade testing for hypertrophic cardiomyopathy.
  • Conducted a retrospective cohort analysis of 64 families reviewed by NHS Tayside Clinical Genetics.
  • Identified a total of 280 cascade-tested individuals.
  • Used analysis of covariance for baseline interventricular size and Cox proportional hazards model for time to major adverse cardiac events.
  • 35.4% of cascade-tested individuals exhibited asymmetrical septal hypertrophy.
  • Interventricular septal size was significantly lower in individuals with a positive genotype than in probands with a pathogenic variant.
  • Cascade-identified individuals showed a decreased risk of cardiac events compared to probands, and an increased risk compared to individuals without a genotype.

Study Design

Type

Cohort (n=276)

Multicenter

Yes

Structured PICO

Do genotype-positive cascade-tested relatives of hypertrophic cardiomyopathy probands have a different risk of major adverse cardiac events compared to probands and genotype-negative relatives?

P
Population
276 adults (over age 18) from 64 families with a clinical diagnosis of hypertrophic cardiomyopathy (probands) or cascade-tested family members of a proband carrying a pathogenic or likely pathogenic sarcomere variant.
I
Intervention
Cascade genetic screening identifying genotype-positive relatives (Cascade/G+)
C
Comparator
Genotype-positive probands (Proband/G+) and genotype-negative cascade-screened relatives (Cascade/G-)
O
Outcome
Composite endpoint of the onset of a repeat major adverse cardiac event (MACE), defined as insertion of an implantable cardioverter defibrillator, heart failure, angina, atrial fibrillation, atrial flutter, ventricular fibrillation, non-sustained ventricular tachycardia, aborted sudden cardiac death, and all-cause mortality.composite

Genotype-positive cascade-tested relatives of hypertrophic cardiomyopathy probands have a milder phenotype and lower event rate than probands, but retain a significantly higher risk of adverse cardiac events than genotype-negative relatives, justifying their ongoing clinical follow-up.

Main Result

Effect estimate: HR 4.0 with 95% CI 1.9 to 8.5 for probands vs cascade tested; HR 4.9 with 95% CI 1.9 to 8.5 for cascade/G+ vs cascade/G-; OR 11.9 (4.9 to 29.3) for lifetime incidence of MACE proband/G+ vs cascade/G+ (95% CI HR 4.0 (1.9 to 8.5), HR 4.9 (1.9 to 8.5), OR 11.9 (4.9 to 29.3))

p-value: p=<0.001

Limitations

  • Retrospective cohort design limits causal inference
  • Single regional NHS population may limit generalizability
  • Missing data and incomplete follow-up led to sample exclusions
  • Phenotype progression assessed retrospectively, potential for ascertainment bias
  • Missing data and incomplete follow-up resulted in exclusion from analyses
  • Difficulty capturing data for genotype-negative patients without cardiac burden locally

Abstract

Objectives Cascade-tested relatives of individuals with pathogenic genetic variants in sarcomere genes causing hypertrophic cardiomyopathy are recommended. Little is known about the outcomes in cascade-identified relatives. We aimed to characterise the endpoints for these individuals. Methods A retrospective cohort case note evaluation of 64 families reviewed by NHS Tayside Clinical Genetics between January 2010 and December 2018 was conducted, identifying 280 patients. The primary endpoint of the study was the composite endpoint of the onset of a repeat major adverse cardiac event (MACE). Analysis of covariance was used to model marginal mean estimates for baseline interventricular size. Cox proportional hazards model was used to depict time to MACEs. Results Asymmetrical septal hypertrophy fulfilling diagnostic criteria on echocardiography was noted in 35.4% of cascade-tested individuals. Adjusted interventricular septal size for cascade-tested individuals with a positive genotype (13.9 mm; 95% CI (12.1 to 15.8)) was lower than that of probands with a pathogenic variant (22.1 mm; 95% CI (19.7 to 24.4); p<0.001) but higher than that of cascade-tested individuals with no genotype (12.3 mm; 95% CI (10.2 to 14.4); p<0.001). Adjusted multivariate event analysis demonstrated decreased risk of adverse cardiac events in cascade-identified individuals compared with probands with a genotype (HR 4.0; 95% CI (1.9 to 8.5); p<0.001) and increased risk compared with cascade-identified relatives without a genotype (HR 3.3 (1.2 to 9.1); p<0.001). Conclusion Our results demonstrate that cascade-tested individuals carrying a pathogenic sarcomere variant retain a degree of complication justifying their identification and follow-up.

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Cite This Study

Chaudhry et al. (2026) conducted a cohort in Adults over 18 years with hypertrophic cardiomyopathy or cascade-tested relatives carrying a pathogenic or likely pathogenic sarcomere variant (n=276). Cascade genetic testing and clinical follow-up for relatives of probands with pathogenic sarcomere gene variants causing hypertrophic cardiomyopathy vs. Probands with genotype positive hypertrophic cardiomyopathy was evaluated on Composite major adverse cardiac events (MACEs) including ICD insertion, heart failure, angina, atrial fibrillation/flutter, ventricular fibrillation, non-sustained ventricular tachycardia, aborted sudden cardiac death, and all-cause mortality (HR 4.0 with 95% CI 1.9 to 8.5 for probands vs cascade tested; HR 4.9 with 95% CI 1.9 to 8.5 for cascade/G+ vs cascade/G-; OR 11.9 (4.9 to 29.3) for lifetime incidence of MACE proband/G+ vs cascade/G+, 95% CI HR 4.0 (1.9 to 8.5), HR 4.9 (1.9 to 8.5), OR 11.9 (4.9 to 29.3), p=<0.001). Cascade genetically tested relatives with pathogenic sarcomere variants had fewer repeat major adverse cardiac events than genotype positive probands (HR 4.0), but more than genotype negative relatives, during a mean 8.9 year follow up.

synapsesocial.com/papers/69a2877b0a974eb0d3c03442https://doi.org/10.1136/openhrt-2025-003557
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