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Global registry collecting data on people with homozygous familial hypercholesterolemia

Collects de-identified records of people with a rare inherited high-cholesterol disorder.

Plain-language title generated from the registry record
Registry title: HoFH, the International Clinical Collaborators Registry

Key facts

Where
Amsterdam, NetherlandsSee the site

Where in Netherlands

  • Department of Vascular Medicine, Amsterdam UMCAmsterdam, NetherlandsTaking people

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  4. What happens if I want to stop?
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Trial details

Who runs it
University of Pennsylvania
Trial code
NCT04815005
Record updated
18 December 2025
Original description
Homozygous familial hypercholesterolemia (HoFH), a rare inherited disorder caused by bi-allelic mutations in the LDL Receptor pathway, is characterized by extremely elevated levels of low-density lipoprotein cholesterol (LDL-C) from birth and premature atherosclerotic cardiovascular disease (ASCVD). Our current knowledge about HoFH is disjointed and largely stems from relatively small case series and expert opinion. HICC (Homozygous FH International Clinical Collaborators) is a global consortium of clinicians who are contributing de-identified data of patients diagnosed with HoFH with the goal to advance our understanding of this rare disease.Read full original descriptionShow less

HoFH, the International Clinical Collaborators - A Global HoFH Data-sharing Platform

Homozygous familial hypercholesterolemia (HoFH), a rare inherited disorder caused by bi-allelic mutations in the LDL Receptor pathway, is characterized by extremely elevated levels of low-density lipoprotein cholesterol (LDL-C) from birth and premature atherosclerotic cardiovascular disease (ASCVD). Our current knowledge about HoFH is disjointed and largely stems from relatively small case series and expert opinion. HICC (Homozygous FH International Clinical Collaborators) is a global consortium of clinicians who are contributing de-identified data of patients diagnosed with HoFH with the goal to advance our understanding of this rare disease.

Inclusion: Diagnosis of homozygous familial hypercholesterolemia (HoFH) clinically of genetically determined.

Exclusion: No diagnosis of HoFH.

ClinicalTrials.gov NCT04815005