Prevention & lipidsCohort study
Homozygous familial hypercholesterolaemia: insights from the Global HoFH International Clinical Collaborators (HICC) Registry
- Registry study
- international registry
Study context
- Population
- Individuals with homozygous familial hypercholesterolaemia (HoFH) from 45 countries
- Participants
- over 950 individuals · 45 countries
Main finding
As reported in the abstract
Characteristics at diagnosis: age at diagnosis, untreated LDL-C, ASCVD or (supra)aortic valve disease, LDL-C goal attainment on LLT · at diagnosis
Age at diagnosis, median (IQR 5.5-27.0)
12 years
Untreated low-density lipoprotein cholesterol (LDL-C), median (11.6-18.4)
14.7 mmol/L
Atherosclerotic cardiovascular disease (ASCVD) or (supra)aortic valve disease at diagnosis
9%
Achieved guideline-recommended LDL-C goals despite widespread lipid-lowering therapy (LLT)
4%
Observational data: associations, not effects.
Further findings
Lipoprotein-apheresis timing
- Early initiation associated with greater LDL-C reductions and delayed ASCVD onset
Sex differences
- No sex differences in age or clinical characteristics at diagnosis, treatment patterns, or timing of ASCVD; usual sex gap in CVD onset absent
Global disparities
- Limited genetic screening, restricted access to LLT, and earlier onset of major adverse CV events in non-high-income countries
Original publication
Homozygous familial hypercholesterolaemia: insights from the Global HICC Registry. Eur Heart J. Published 18 May 2026. doi:10.1093/eurheartj/ehag357
Summarised from the published abstract; every number is checked against it