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Bone drug may stop Paget's before it starts in at-risk families

NCT ID NCT03859895

Prevention Sponsor: University of Edinburgh 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 This study
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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jun 27, 2026

Summary

This study follows people who carry a gene mutation that puts them at high risk for Paget's disease of the bone. They previously received either zoledronic acid or a placebo in the ZiPP trial. Now researchers will track them for another 5 years to see if the drug can prevent or delay bone lesions and symptoms. The goal is to learn whether early treatment can stop the disease from ever causing problems.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance
zoledronic acid (a bisphosphonate drug)
What this could lead to
If it works, this could point toward a way to prevent Paget's disease in people who carry the high-risk gene mutation.
What could go wrong
This is an extension of an earlier trial, and it is still unclear whether preventing bone lesions will actually prevent symptoms. The study is small and focused on a specific genetic group, so results may not apply to everyone.

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

About 287 people

The number the study aims to enrol. It can still change while the study runs.

Started

Apr 2019

Expected to finish

May 2027

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

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 recruited to the ZiPP Trial (2008-005667-34)

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: * Subject that participated in ZiPP * Participant willing and able to consent and comply with the study protocol. Exclusion Criteria: * Unable or unwilling to provide informed consent

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Conditions

The condition(s) this trial relates to.

Paget disease bone Paget disease prevention target

As listed by the trial registrant

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

Paget disease

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    21 sites in 7 countries. The list below names each one and where it is.

  2. The official record

    The full official record for this study. This one lists no contact details, but it is the first place any would appear.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Guy's and St Thomas Hospital NHS Trust

    London, England, SE1 9RT, United Kingdom

  • King's College Hospital

    London, England, SE5 9RS, United Kingdom

  • Manchester Royal Infirmary

    Manchester, England, M13 9WL, United Kingdom

  • NHS Lothian

    Edinburgh, Scotland, EH4 2XU, United Kingdom

  • Royal Newcastle Centre

    Newcastle, NSW 2305, Australia

  • Sir Charles Gardner Hospital

    Nedlands, 6009, Australia

  • St. Vincent's University Hospital

    Dublin, Ireland

  • The Princess Margaret Hospital

    Christchurch, 731 8022, New Zealand

  • Univeristy of Barcelona

    Barcelona, Spain

  • University Hospital Geelong

    Geelong, 3220, Australia

  • University Hospital Saint-Luc

    Brussels, Belgium

  • University Hospital of Careggi

    Florence, 50139, Italy

  • University Hospital of Salamanca

    Salamanca, 37007, Spain

  • University of Auckland

    Auckland, 92019, New Zealand

  • University of Bristol

    Bristol, England, BC10 5NB, United Kingdom

  • University of Liverpool

    Liverpool, England, L7 8XP, United Kingdom

  • University of Queensland

    Toowoomba, QLD 4350, Australia

  • University of Siena

    Siena, 53100, Italy

  • University of Sydney

    Sydney, Australia

  • University of Turin

    Turin, 10126, Italy

  • Wrexham Maelor Hospital

    Wrexham, Wales, LL13 7TD, United Kingdom

More trials for these conditions

Other studies related to the condition(s) this trial covers.