Global registry collecting data on people with homozygous familial hypercholesterolemia
Collects de-identified records of people with a rare inherited high-cholesterol disorder.
Plain-language title generated from the registry record
Registry title: HoFH, the International Clinical Collaborators Registry
Key facts
- Where
- Amsterdam, NetherlandsSee the site
AI summary: who the study is looking for
From the trial's eligibility criteria. Machine-read from the registry text on this page, so it can be wrong. The registry text below and the trial team decide who can take part.
The registry is looking for people with homozygous familial hypercholesterolemia (HoFH), a rare inherited disorder with very high LDL cholesterol from birth. The diagnosis can be clinical or genetic.
- Sex
- All sexes can join.
- Disease stage
- A diagnosis of homozygous familial hypercholesterolemia (HoFH), made clinically or by genetic testing.
Main reasons for not taking part
- No diagnosis of HoFH
Read by machine on 12 November 2026.
Where in Netherlands
- Department of Vascular Medicine, Amsterdam UMCAmsterdam, NetherlandsContact: G. Kees Hovingh, MD, PhDTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Contact the study team: see the registry record → Contacts and Locations
Print a page for my doctorTrial details
- Who runs it
- University of Pennsylvania
- Trial code
- NCT04815005
- Record updated
- 18 December 2025
- Original description
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.Read full original descriptionShow less
HoFH, the International Clinical Collaborators - A Global HoFH Data-sharing Platform
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.
Inclusion: Diagnosis of homozygous familial hypercholesterolemia (HoFH) clinically of genetically determined.
Exclusion: No diagnosis of HoFH.