Researchers watch and learn: PH1 study tracks 207 patients over time

NCT ID NCT04982393

Ongoing Knowledge-focused Sponsor: Alnylam Pharmaceuticals Source: ClinicalTrials.gov ↗

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study follows 207 people with primary hyperoxaluria type 1 (PH1), a rare kidney disease, to see how the condition progresses over time. Researchers are also checking the long-term safety and real-world effectiveness of the drug lumasiran. Participants are not given any new treatment—just observed and monitored as part of their regular care.

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Conditions

The condition(s) this trial relates to.

primary hyperoxaluria type 1

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

PRIMARY HYPEROXALURIA TYPE 1

Contacts and locations

Locations

Clinical Trial Site

Phoenix, Arizona, 85016, United States
Clinical Trial Site

Washington D.C., District of Columbia, 20010, United States
Clinical Trial Site

Boston, Massachusetts, 02115, United States
Clinical Trial Site

Rochester, Minnesota, 55905, United States
Clinical Trial Site

Cincinnati, Ohio, 45229, United States
Clinical Trial Site

Pittsburgh, Pennsylvania, 15213, United States
Clinical Trial Site

Dallas, Texas, 75390, United States
Clinical Trial Site

Houston, Texas, 77030, United States
Clinical Trial Site

Ghent, Belgium
Clinical Trial Site

Liège, Belgium
Clinical Trial Site

Hamilton, Ontario, Canada
Clinical Trial Site

Toronto, Ontario, Canada
Clinical Trial Site

Laurier, Quebec, Canada
Clinical Trial Site

Bordeaux, France
Clinical Trial Site

Lyon, France
Clinical Trial Site

Paris, France
Clinical Trial Site

Berlin, Germany
Clinical Trial Site

Cologne, Germany
Clinical Trial Site

Hamburg, Germany
Clinical Trial Site

Jerusalem, Israel
Clinical Trial Site

Orbassano, Torino, Italy
Clinical Trial Site

Milan, Italy
Clinical Trial Site

Verona, Italy
Clinical Trial Site

Amsterdam, Netherlands
Clinical Trial Site

Santa Cruz de Tenerife, Canary Islands, Spain
Clinical Trial Site

Barcelona, Spain
Clinical Trial Site

Las Palmas, Spain
Clinical Trial Site

Bern, Switzerland
Clinical Trial Site

London, England, United Kingdom
Clinical Trial Site

London, United Kingdom

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