Massive sickle cell study aims to unlock secrets of organ damage

NCT ID NCT02098863

First seen Jun 26, 2026 · Last updated Jun 27, 2026 · Updated 1 time

Summary

This study will follow 10,000 people with sickle cell disease for many years, tracking their health during regular clinic visits. Researchers want to learn how the disease damages organs over time and how treatments like hydroxyurea might help prevent that damage. A smaller part of the study will also look at how genes affect response to hydroxyurea.

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 study could reveal how to prevent long-term organ damage in sickle cell disease and identify who benefits most from hydroxyurea.
What could go wrong
This is an observational study, not a treatment trial. It collects data over many years, so results will take time and may not lead to immediate changes in care.

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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

Study contacts

  • Contact

    Email: •••••@•••••

Locations

  • Children's Hospital of Illinois at OSF-Saint Francis Medical Center

    RECRUITING

    Peoria, Illinois, 61637, United States

  • Methodist Adult Comprehensive Sickle Cell Center

    RECRUITING

    Memphis, Tennessee, 38104, United States

  • Novant Health Hemby Children's Hospital

    RECRUITING

    Charlotte, North Carolina, 28204, United States

  • Our Lady of the Lake Regional Medical Center

    COMPLETED

    Baton Rouge, Louisiana, 70808, United States

  • Regional One Health, Diggs-Kraus Sickle Cell Center

    RECRUITING

    Memphis, Tennessee, 38103, United States

  • St. Jude Children's Research Hospital

    RECRUITING

    Memphis, Tennessee, 38105, United States

    Contact Email: •••••@•••••

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