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Worldwide HoFH data pool aims to unlock rare cholesterol disease secrets

NCT ID NCT04815005

First seen Jan 04, 2026 · Last updated May 23, 2026 · Updated 18 times

Summary

This study is building a global database of health information from 1,000 people with homozygous familial hypercholesterolemia (HoFH), a rare inherited condition that causes extremely high cholesterol from birth. Researchers will collect de-identified medical data to better understand the disease and how it is managed around the world. No new treatments are being tested; the goal is to gather knowledge that can guide future care.

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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.