HoFH, the International Clinical Collaborators Registry

Recruiting now

Conditions studied: Homozygous Familial Hypercholesterolemia

In brief

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.

Key facts

Study ID

NCT04815005

Run by

University of Pennsylvania

People needed

1000

Starts

2017-01-24

Expected to finish

2026-12-31

Last updated by the study team

2025-12-18

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Diagnosis of homozygous familial hypercholesterolemia (HoFH) clinically of genetically determined

You may not qualify if…

• No diagnosis of HoFH

Where it is running

• University of Pennsylvania — Philadelphia, Pennsylvania, United States (enrolling)
• Department of Vascular Medicine, Amsterdam UMC — Amsterdam, Netherlands (enrolling)
• Department of Medicine, Division of Lipidology and Hatter Institute for Cardiovascular Research in Africa, University of Cape Town — Cape Town, South Africa (enrolling)
• c. Carbohydrate and Lipid Metabolism Research Unit, Faculty of Health Sciences, University of Witwatersrand — Johannesburg, South Africa (enrolling)

Full record on ClinicalTrials.gov

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