Worldwide effort to unlock secrets of rare cholesterol disease
NCT ID NCT04815005
First seen Jun 27, 2026 · Last updated Jun 27, 2026
Summary
This study is building a global database of 1000 people with homozygous familial hypercholesterolemia (HoFH), a rare inherited condition causing extremely high cholesterol from birth. Researchers are gathering de-identified medical data from clinics around the world to better understand the disease, how it is diagnosed, and how it is treated. The goal is to improve knowledge and care for this serious condition.
What this could mean
Our plain-language read of the trial. This is informational only — not medical advice or a prediction.
- What this could lead to
- If successful, this could lead to a clearer picture of how HoFH affects people around the world and help guide better treatment strategies.
- What could go wrong
- This is an observational data-sharing study, not a treatment trial. It will not directly test any new drug or therapy, and results may take years to influence patient care.
This is an AI summary of the original study and may miss details. Read our disclaimer.
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Conditions
The condition(s) this trial relates to.
As listed by the trial registrant
The condition terms exactly as the trial's registrant entered them.
Contacts and locations
Locations
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Department of Medicine, Division of Lipidology and Hatter Institute for Cardiovascular Research in Africa, University of Cape Town
RECRUITINGCape Town, South Africa
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Department of Vascular Medicine, Amsterdam UMC
RECRUITINGAmsterdam, Netherlands
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University of Pennsylvania
RECRUITINGPhiladelphia, Pennsylvania, 19104, United States
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c. Carbohydrate and Lipid Metabolism Research Unit, Faculty of Health Sciences, University of Witwatersrand
RECRUITINGJohannesburg, South Africa
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Other studies related to the condition(s) this trial covers.
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