Worldwide effort to unlock secrets of rare cholesterol disease

NCT ID NCT04815005

First seen Jan 04, 2026 · Last updated May 16, 2026 · Updated 16 times

Summary

This study gathers anonymous health information from 1,000 people with homozygous familial hypercholesterolemia (HoFH), a rare genetic condition causing extremely high cholesterol from birth. Researchers aim to pool data from clinics around the world to better understand the disease and improve care. No treatments or tests are given—only existing medical records are shared.

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This is a summary of the original study . Summaries may miss details or leave out important information. Before applying or accepting participation, make sure you have read and understood the full study. Curemydisease.com takes no responsibility whatsoever for anything missed, misunderstood, or acted upon as a result of our summary — we know it does not capture everything.

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Contacts and locations

Study contacts

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

  • Contact

    Phone: •••-•••-•••• Email: •••••@•••••

Locations

  • Department of Medicine, Division of Lipidology and Hatter Institute for Cardiovascular Research in Africa, University of Cape Town

    RECRUITING

    Cape Town, South Africa

    Contact Email: •••••@•••••

    Contact

  • Department of Vascular Medicine, Amsterdam UMC

    RECRUITING

    Amsterdam, Netherlands

    Contact Email: •••••@•••••

    Contact

  • University of Pennsylvania

    RECRUITING

    Philadelphia, Pennsylvania, 19104, United States

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact Phone: •••-•••-•••• Email: •••••@•••••

    Contact

  • c. Carbohydrate and Lipid Metabolism Research Unit, Faculty of Health Sciences, University of Witwatersrand

    RECRUITING

    Johannesburg, South Africa

    Contact Email: •••••@•••••

    Contact

Conditions

Explore the condition pages connected to this study.