Homozygous Familial Hypercholesterolemia Is a Life-Limiting Condition Medical Life-Trajectories in the Post-2010 Era

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Authors

MULDER Janneke W C M REIJMAN M Doortje KUSTERS D Meeike BOERSMA Eric ALNOURI Fahad BLOM Dirk J CATAPANO Alberico L CUCHEL Marina DANN Eldad J FREIBERGER Tomáš GROSELJ Urh HARADA-SHIBA Mariko HOVINGH G Kees IATAN Iulia IBARRETXE Daiana KAYIKCIOGLU Meral KIM Ngoc-Thanh KLINGEL Reinhard RAAL Frederick J REESKAMP Laurens F SADIQ Fouzia SCHONCK Willemijn A M TROMP Tycho R TRUONG Thanh-Huong WIEGMAN Albert ROETERS van Lennep Jeanine E

Year of publication 2025
Type Article in Periodical
Magazine / Source JACC-JOURNAL OF THE AMERICAN COLLEGE OF CARDIOLOGY
MU Faculty or unit

Faculty of Medicine

Citation
web https://www.sciencedirect.com/science/article/pii/S0735109725061674?pes=vor&utm_source=clarivate&getft_integrator=clarivate
Doi https://doi.org/10.1016/j.jacc.2025.04.005
Keywords ASCV D; cardiovascular disease; homozygous familial hypercholesterolemia; LDL-cholesterol; mortality
Attached files
Description Homozygous familial hypercholesterolemia (HoFH) is a rare (~1:360,000) genetic disorder characterized by extremely high low-density lipoprotein cholesterol (LDL-C) levels, leading to premature atherosclerotic cardiovascular disease (ASCVD) and early death. HoFH is typically caused by bi-allelic pathogenic variants in low-density lipoprotein receptor (LDLR), APOB, and/or PCSK9 genes via a semidominant inheritance pattern, while LDLRAP1 pathogenic variants cause a rare recessive form. Phenotypic severity is generally correlated with residual LDLR function. Lipid-lowering treatment (LLT) is initiated with a combination of high-intensity statin and ezetimibe, followed by a trial of proprotein convertase subtilisin-kexin type 9 (PCSK9) inhibitor therapy, which is continued if LDL-C reduction is >15%. If LDL-C goals remain unmet, LDLR-independent drugs, apheresis, or rarely liver transplantation are pursued.1 Despite combination LLT, most patients with HoFH do not reach guideline-recommended LDL-C goals. Data on life-courses largely stem from older case reports and case series when more recent LLT were not available. We describe characteristics and clinical courses of HoFH patients under contemporary care, with particular focus on deceased patients.
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