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HoFH, the International Clinical Collaborators Registry
Sponsor: University of Pennsylvania
Summary
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.
Official title: HoFH, the International Clinical Collaborators - A Global HoFH Data-sharing Platform
Key Details
Gender
All
Age Range
Any - Any
Study Type
OBSERVATIONAL
Enrollment
1000
Start Date
2017-01-24
Completion Date
2026-12-31
Last Updated
2025-12-18
Healthy Volunteers
No
Conditions
Interventions
Demographics, diagnosis type, genotype, lipid profile, treatment allocation, country of residence.
Differences in diagnosis, genotype, lipid profile treatment allocation among HoFH patients worldwide.
Locations (4)
University of Pennsylvania
Philadelphia, Pennsylvania, United States
Department of Vascular Medicine, Amsterdam UMC
Amsterdam, Netherlands
Department of Medicine, Division of Lipidology and Hatter Institute for Cardiovascular Research in Africa, University of Cape Town
Cape Town, South Africa
c. Carbohydrate and Lipid Metabolism Research Unit, Faculty of Health Sciences, University of Witwatersrand
Johannesburg, South Africa