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HoFH, the International Clinical Collaborators Registry

Recruitingn/aAges any - anyAllUniversity of Pennsylvania
NCT04815005 on ClinicalTrials.gov ↗
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In plain words

What the trial is, and whether it could suit you

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.

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📋 Eligibility rules (as published)
Inclusion Criteria: * Diagnosis of homozygous familial hypercholesterolemia (HoFH) clinically of genetically determined Exclusion Criteria: * No diagnosis of HoFH
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What it tests

  • Demographics, diagnosis type, genotype, lipid profile, treatment allocation, country of residence.
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Where

4 sites
University of Pennsylvania
Philadelphia, 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
🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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