NCT04815005Recruiting
HoFH, the International Clinical Collaborators Registry
HoFH, the International Clinical Collaborators - A Global HoFH Data-sharing Platform
Source: ClinicalTrials.gov · Last updated 18 Dec 2025
Brief summary (registry, in English)
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.
- Status (registry)
- Recruiting
- Study type
- Observational
- Enrollment
- 1000 (estimated)
- First submitted
- 4 Mar 2021
- Start date
- 24 Jan 2017
- Primary completion date
- 31 Dec 2026
- Lead sponsor
- University of Pennsylvania
- Diseases
- Familial hypercholesterolaemia
- NCT number
- NCT04815005
What you commit to
- Study type: Observational
- Planned participants: 1000
- From 24 Jan 2017 to the primary completion date, 31 Dec 2026
- 4 sites in 3 countries
- Visits and tests: ask the trial team, the registry does not list them
Built from the registry fields of ClinicalTrials.gov. It describes the study, not your situation.
Who cannot take part
Copied verbatim from ClinicalTrials.gov and grouped by topic. Only the trial team decides who can take part.
Other
- No diagnosis of HoFH
Who the study is looking for
- Diagnosis of homozygous familial hypercholesterolemia (HoFH) clinically of genetically determined
Sex: All · Does not accept healthy volunteers
Sites (4)
Sites in registry order. Pick your city on the disease page to sort them by distance.
| Site | City | Country | Site status |
|---|---|---|---|
| Department of Vascular Medicine, Amsterdam UMC Coordinator of this site? Confirm its status | Amsterdam | Netherlands | Recruiting |
| University of Pennsylvania Coordinator of this site? Confirm its status | Philadelphia | United States | Recruiting |
| Department of Medicine, Division of Lipidology and Hatter Institute for Cardiovascular Research in Africa, University of Cape Town Coordinator of this site? Confirm its status | Cape Town | South Africa | Recruiting |
| c. Carbohydrate and Lipid Metabolism Research Unit, Faculty of Health Sciences, University of Witwatersrand Coordinator of this site? Confirm its status | Johannesburg | South Africa | Recruiting |
This page is information, not medical advice. Discuss any trial with your doctor.