BONAPH1DE, A Prospective Observational Study of Patients With Primary Hyperoxaluria Type 1 (PH1)

NCT04982393 · tracked via the Priya Life Science UK tracker

Sponsor

Alnylam Pharmaceuticals

Phase

Observational

Started

2021-12-13

Last updated

2026-09-08

Condition(s) studied

Primary Hyperoxaluria Type 1

Study summary

The purpose of this study is to describe the natural history and progression of patients diagnosed with PH1, and to characterize the long-term real-world safety and effectiveness of lumasiran.

Eligibility

Sex

ALL

Min age

—

Max age

—

Healthy volunteers

Inclusion Criteria: * Documented diagnosis of PH1, per physician's determination Exclusion Criteria: * Currently enrolled in a clinical trial for any investigational agent

Primary outcome measure(s)

Incidence of Adverse Events in Lumasiran Treated Patients — Up to 7 years

Trial sites (30)

Facility	City	Region
Clinical Trial Site	Phoenix	Arizona
Clinical Trial Site	Washington D.C.	District of Columbia
Clinical Trial Site	Boston	Massachusetts
Clinical Trial Site	Rochester	Minnesota
Clinical Trial Site	Cincinnati	Ohio
Clinical Trial Site	Pittsburgh	Pennsylvania
Clinical Trial Site	Dallas	Texas
Clinical Trial Site	Houston	Texas
Clinical Trial Site	Ghent	Belgium
Clinical Trial Site	Liège	Belgium
Clinical Trial Site	Hamilton	Ontario
Clinical Trial Site	Toronto	Ontario
Clinical Trial Site	Laurier	Quebec
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
Clinical Trial Site	Milan	Italy
Clinical Trial Site	Verona	Italy
Clinical Trial Site	Amsterdam	Netherlands
Clinical Trial Site	Santa Cruz de Tenerife	Canary Islands
Clinical Trial Site	Barcelona	Spain
Clinical Trial Site	Las Palmas	Spain
Clinical Trial Site	Bern	Switzerland
Clinical Trial Site	London	England
Clinical Trial Site	London	United Kingdom

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ELEVATE, a Registry of Patients With Acute Hepatic Porphyria (AHP) Recruiting

Other trials for the same condition

Safety & Efficacy of DCR-PHXC in Patients With PH1 and ESRD Recruiting

Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT04982393 on ClinicalTrials.gov ↗ ← All trials in the UK