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New study aims to unlock XLH mysteries in adults

NCT ID NCT07607600

Knowledge-focused Sponsor: Novo Nordisk A/S 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
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 Results may not be published yet.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 This study
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This status has not been confirmed recently, so it may be out of date.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 Aug 28, 2026 · Updated 1 time

Summary

This study will follow 100 adults with X-linked hypophosphatemia (XLH) who are already taking burosumab. Researchers want to see how phosphate levels change over time and how they relate to bone health and overall disease burden. The goal is to better understand the condition and improve future management.

What this could mean

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

What this could lead to
If successful, this study could provide clearer guidance on managing XLH with burosumab, potentially improving bone health and quality of life for patients.
What could go wrong
This is an observational study, not a treatment trial, so it won't directly test a new therapy. Results may not lead to immediate changes in 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.

Expected to start

Jul 2026

An estimate. Start dates often move.

Expected to finish

Jul 2030

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

Adults with XLH, confirmed genetically or clinically as determined by the investigator, who have been treated with burosumab for at least 90 days prior to the screening/baseline visit and whose treatment is still ongoing. Participants will be followed for a maximum of three years, continuing until end of trial visit, withdrawal of consent or loss to follow-up, whichever occurs first.

Ages

18 to 64 years

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: * Informed consent obtained before any trial-related activities, i.e., any procedure related to recording of data according to the protocol. * Male or female and aged 18-64 years (both inclusive) at the time of signing informed consent. * Diagnosis of congenital XLH, confirmed genetically or clinically as determined by the investigator, supported by documentation. * Participants have been treated with burosumab for at least 90 days prior to the screening/baseline visit and treatment is still ongoing. * Participant confirms ability and willingness to attend visits according to routine clinical care and mandatory assessments at the site. Exclusion Criteria: * Previous rescreening for this trial. * Current participation in any interventional clinical trial. Participation in another non-interventional trial, such as a patient registry trial, is permitted. * Any condition not associated with XLH, which in the investigator's opinion might jeopardise participant's safety or compliance with the protocol.

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Conditions

The condition(s) this trial relates to.

X-linked dominant hypophosphatemic rickets X-linked hypophosphatemic rickets

As listed by the trial registrant

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

X-linked hypophosphatemia (XLH)

Contacts and locations

Locations

  • Azienda Ospedaliera di Padova - U.O.C. di Gastroenterologia

    Padova, 35128, Italy

  • Bone Research and Education Centre

    Oakville, Ontario, L6M 1M1, Canada

  • CHU de Bicetre

    Le Kremlin, 94275, France

  • Charite Campus Virchow

    Berlin, 13353, Germany

  • Endokrinologikum Goettingen

    Göttingen, 37075, Germany

  • Fondazione Policlinico Universitario Campus Bio-Medico

    Rome, 00128, Italy

  • Fukuoka University - Fukuoka University Hospital

    Fukuoka, Fukuoka, 814-0180, Japan

  • Hopital Cochin - APHP

    Paris, 75014, France

  • Indiana University Hospital

    Indianapolis, Indiana, 46202-5271, United States

  • Iseikai International General Hospital

    Osaka, 530-0052, Japan

  • Istituto Auxologico Italiano

    Milan, 20145, Italy

  • Japan Community Healthcare Organization Osaka Hospital

    Osaka, 553-0003, Japan

  • Leiden University Medical Center (Leids Universitair Medisch Centrum (LUMC))

    Leiden, 2333 ZA, Netherlands

  • Monash University - Monash Medical Centre (MMC)

    Clayton, Victoria, 3168, Australia

  • Northern Sydney Cancer Centre-Royal North Shore Hospital (RNSH)

    St Leonards, New South Wales, 2065, Australia

  • Office of Francesco Di Costanzo, MD

    Sesto Fiorentino, Florence, 50019, Italy

  • Okayama Saiseikai Outpatient Center Hospital

    Okayama, Okayama-ken, 700-0013, Japan

  • The Ohio State University Wexner Medical Center (OSUWMC) - CarePoint East

    Columbus, Ohio, 43203, United States

  • The University of Tokyo Hospital

    Bunkyo-ku, Tokyo, 113-8655, Japan

  • Universitat Wurzburg Koenig-Ludwig-Haus

    Wuezburg, 97074, Germany

  • Vanderbilt University Medical Center

    Nashville, Tennessee, 37232-8148, United States

  • Westmead Hospital

    Westmead, New South Wales, 2145, Australia

  • Yale University School of Medicine

    New Haven, Connecticut, 06510, United States

More trials for these conditions

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