New hope for Sun-Sensitive patients: bitopertin Long-Term trial launches

NCT ID NCT05883748

First seen Nov 01, 2025 · Last updated Apr 29, 2026 · Updated 29 times

Summary

This study is for people with erythropoietic protoporphyria (EPP) or X-linked protoporphyria (XLP), rare conditions that cause severe pain when skin is exposed to sunlight. The drug bitopertin is being tested to see if it can safely increase the time patients can spend in daylight without pain. About 230 participants who have already been in a bitopertin study will take the drug long-term, and researchers will monitor side effects and changes in blood markers.

Disclaimer Read more

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.

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for ERYTHROPOIETIC PROTOPORPHYRIA are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Contacts and locations

Locations

  • Atrium Health Wake Forest Baptist

    Winston-Salem, North Carolina, 27157, United States

  • Einstein Medical Center

    Philadelphia, Pennsylvania, 19141, United States

  • Fred Hutchinson Cancer Center

    Seattle, Washington, 98109, United States

  • Massachusetts General Hospital

    Boston, Massachusetts, 02114, United States

  • MetroBoston Clinical Partners

    Boston, Massachusetts, 02135, United States

  • Mount Sinai Hospital

    New York, New York, 10029, United States

  • Remington-Davis Clinical Research

    Columbus, Ohio, 43215, United States

  • Royal Prince Alfred Hospital

    Camperdown, New South Wales, 2050, Australia

  • The Royal Melbourne Hospital

    Parkville, Victoria, 3050, Australia

  • University of Alabama Hospital

    Birmingham, Alabama, 35233, United States

  • University of California San Francisco

    San Francisco, California, 94117, United States

  • University of Miami Miller School of Medicine

    Miami, Florida, 33136, United States

  • University of Texas

    Galveston, Texas, 77550, United States

Conditions

Explore the condition pages connected to this study.