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XLH patients observed for a decade to uncover disease secrets

NCT ID NCT03745521

Knowledge-focused Sponsor: Kyowa Kirin Co., Ltd. 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 Results may not be published yet.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This status has not been confirmed recently, so it may be out of date.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 26, 2026 · Last updated Jun 26, 2026 · Updated 1 time

Summary

This study follows 226 people with X-linked hypophosphatemia (XLH) for up to 10 years. Researchers will collect data on height, walking ability, fractures, and overall health to better understand how the disease progresses and affects daily life. No new treatment is being tested; the goal is to gather information that may improve future 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

226 people

The number who actually took part.

Started

May 2018

Expected to finish

Dec 2028

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 with XLH independent of treatment regimen

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: * Patients must meet at least one of the following: 1. Documented PHEX gene mutation 2. Documented PHEX gene mutation in at least one family member with X-linked genetic relationship 3. Documented FGF23 \>30 pg/mL * Typical clinical findings of rickets/osteomalacia * Written informed consent obtained from patients aged \>=18 years or from parents or legally acceptable representatives of patients aged \<18 years Exclusion Criteria: * Participation in any clinical study (trial) at the time of informed consent * Any patient whose participation in the study is considered inappropriate by the investigator or the subinvestigator

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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

Contacts and locations

Locations

  • Osaka University Hospital

    Osaka, Japan

More trials for these conditions

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