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HoFH, the International Clinical Collaborators Registry

ConditionHomozygous Familial Hypercholesterolemia
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorUniversity of Pennsylvania

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.

Eligibility criteria

This trial does not accept healthy volunteers

Qualifiers

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

Disqualifiers

No diagnosis of HoFH

Trial population

The registry aims to include data from as many patients diagnosed with HoFH as possible. All patients must be living at time of entry into the database or have been deceased within the last 5 years.

Trial design

Design model

Case-only

Time perspective

Cross-sectional

Treatments tested in this trial

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

    Other intervention

    Differences in diagnosis, genotype, lipid profile treatment allocation among HoFH patients worldwide.

Treatment groups

1,000 Participants
are divided into 1 treatment group
Group A: HoFH1 intervention

Trial outcomes

Primary outcomes

1

Number of participants entered into the database

Number of study participants with homozygous familial hypercholesterolemia

Time frame
Through study completion, an average of 8 years

Secondary outcomes

1

Untreated and treated LDL-C levels across world income regions

Number of treated versus number of untreated subjects with relevant LDL-C levels

Time frame
Through study completion, an average of 8 years

Other outcomes

Sponsors and contacts

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University of Pennsylvania

Lead sponsor

University of Amsterdam

Collaborator

University of Cape Town

Collaborator

University of Witwatersrand, South Africa

Collaborator

Source ClinicalTrials.gov
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