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

NCT ID NCT04982393

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

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing This study
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Sep 09, 2026 · Updated 2 times

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.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

207 people

The number who actually took part.

Started

Dec 2021

Expected to finish

Jan 2029

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients diagnosed with PH1 will be managed and treated per routine clinical practice.

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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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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