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Massive PNH registry tracks drug safety and disease course

NCT ID NCT01374360

First seen Feb 01, 2026 · Last updated May 23, 2026 · Updated 13 times

Summary

This study collected data from over 6,000 people with PNH to monitor the safety of two drugs, Soliris and Ultomiris, and understand how the disease progresses. Participants included patients of any age who had a PNH diagnosis or a PNH clone. The goal was to track serious events like infections, blood clots, and organ problems, not to test a new treatment.

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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

Locations

  • Contact the PNH Registry at Alexion Pharmaceuticals, Inc. for worldwide locations.

    Boston, Massachusetts, 02210, United States

Conditions

Explore the condition pages connected to this study.