HoFH, the International Clinical Collaborators Registry

Part of paid clinical trials in Philadelphia, Pennsylvania.

Sponsor
University of Pennsylvania
Study ID
NCT04815005
Status
Recruiting
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Conditions

  • Homozygous Familial Hypercholesterolemia

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Interventions

  • Demographics, diagnosis type, genotype, lipid profile, treatment allocation, country of residence. — OTHER
    Differences in diagnosis, genotype, lipid profile treatment allocation among HoFH patients worldwide.

Study Details

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 Dates

Start date
Jan 24, 2017
Status verified
Dec 2025
Primary completion
Dec 31, 2026
Completion
Dec 31, 2026

Study Design

Enrollment
1,000 participants (estimated)

Arms

  • Arm: HoFH
    Patients diagnosed with HoFH by their physicians, either based on clinical or genetic criteria.

Primary Outcome Measure

Number of participants entered into the database [ Time Frame: Through study completion, an average of 8 years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
University of PennsylvaniaPhiladelphiaPennsylvania19104
Marina Cuchel, MD, PhD
[email protected]
215-662-7188
Lauren Vincent, MRA
[email protected]
2156155448
Marina Cuchel, MD, PhD (PRINCIPAL_INVESTIGATOR)

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