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RECRUITINGOBSERVATIONAL

HoFH, the International Clinical Collaborators Registry

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

Important: This information is not medical advice. Talk to your doctor about whether a clinical trial is right for you.

About This Trial

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.

Who May Be Eligible (Plain English)

Who May Qualify: - Diagnosis of homozygous familial hypercholesterolemia (HoFH) clinically of genetically determined Who Should NOT Join This Trial: - No diagnosis of HoFH Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language
Inclusion Criteria: * Diagnosis of homozygous familial hypercholesterolemia (HoFH) clinically of genetically determined Exclusion Criteria: * No diagnosis of HoFH

Treatments Being Tested

OTHER

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