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New study aims to predict Paget's disease before it strikes

NCT ID NCT05309954

Knowledge-focused 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
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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 Jul 02, 2026 · Updated 2 times

Summary

This study looks at whether a genetic test can predict who will develop Paget's disease of the bone, a condition that can cause pain, deformity, and hearing loss. Researchers are studying 135 people aged 45 and older who have a parent or sibling with Paget's but do not have the disease themselves. Participants get a bone scan at the start and again after five years, along with blood, saliva, and stool tests, to see how well genetic markers predict the disease.

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

135 people

The number who actually took part.

Started

Jan 2022

Expected to finish

Jun 2031

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

We will aim to recruit up to individuals (Cases) with a positive family history of PDB and Spouses, friends and or unrelated relatives of the cases as a control cohort.

Ages

45 years and older

Sex

Anyone

Healthy volunteers

Accepted

You do not need to have the condition being studied to take part.

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 CASES * Family history of PDB affecting first degree relative such as a parent or sibling. * Not already diagnosed with PDB * Participant willing and able to consent and comply with the study protocol. * Age \> 45 at the time of enrolment. EXCLUSION CRITERIA CASES * Unable or unwilling to provide informed consent * Contraindication to radionuclide bone scan * Already diagnosed with PDB INCLUSION CRITERIA CONTROLS * Spouse, partner or friend of case * Not diagnosed with PDB * No family history of PDB * Participant willing and able to consent and comply with the study protocol. * Age \> 45 at the time of enrolment EXCLUSION CRITERIA CONTROLS • Unable or unwilling to give informed consent

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Conditions

The condition(s) this trial relates to.

Osteitis Deformans 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 Paget disease of bone

Contacts and locations

Locations

  • NHS Lothian

    Edinburgh, EH4 2XU, United Kingdom

More trials for these conditions

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