What It's really like: teens with XLH share their journey as bones stop growing

NCT ID NCT05181839

Completed Knowledge-focused Sponsor: Kyowa Kirin Pharmaceutical Development Ltd Source: ClinicalTrials.gov ↗

First seen Jul 13, 2026 · Last updated Jul 14, 2026 · Updated 1 time

Summary

This study follows about 25 adolescents aged 12–17 with X-Linked Hypophosphatemia (XLH) who are being treated with burosumab and are nearing the end of their skeletal growth. Researchers will track symptoms, activity levels, and overall burden through surveys and interviews over 26 weeks after growth plates close. The goal is to understand how their lived experience changes—whether they continue or stop burosumab—and to identify what support they and their caregivers need during this transition.

What this could mean

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

Active substance: burosumab
What this could lead to: If successful, this could help doctors and families understand what adolescents with XLH go through during this key growth stage, potentially guiding better support and treatment decisions.
What could go wrong: This is a small observational study (25 people) that describes experiences rather than testing a new treatment. It may not apply to all patients, and results depend on honest reporting from participants.

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

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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

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Locations

APHP Paris - Assistance Publique Hopitaux de Paris

Paris, France
Alder Hey Children's Hospital

Liverpool, United Kingdom
Birmingham Women's and Children's Hospital

Birmingham, United Kingdom
Bristol Royal

Bristol, United Kingdom
Centre Hospitalier Universitair de Lille

Lille, France
Charité - Universitätsmedizin Berlin

Berlin, State of Berlin, 10117, Germany
Great Ormond Street Hospital

London, United Kingdom
Hospices Civils De Lyon

Lyon, France
Hospital General Universitario Santa Lucía

Cartagena, Murcia, 30202, Spain
Hospital Saint Joan de Deu

Barcelona, Catalona, 08907, Spain
Hospital Universitari Vall d'Hebron

Barcelona, Catalonia, 08035, Spain
Hospital Universitario Virgen a de las Nieves

Granada, Granada, 18014, Spain
Royal Manchester Childrens Hospital

Manchester, Greater Manchester, M13 9WL, United Kingdom
University Medical Center Groningen - Beatrix Children's Hospital

Groningen, Netherlands

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