Registry for Patients With X-Linked Hypophosphatemia

Recruiting now

Conditions studied: X-Linked Hypophosphatemia

In brief

This is an international, multicentre, prospective, non-interventional, observational Registry of patients with X-Linked hypophosphatemia (XLH). The main objective of this XLH Registry is to collect data to characterise the treatment, progression and long-term outcomes of XLH in both adult and paediatric settings.

Key facts

Study ID

NCT03193476

Run by

Kyowa Kirin Pharmaceutical Development Ltd

People needed

1489

Starts

2017-09-12

Expected to finish

2029-07-01

Last updated by the study team

2026-07-09

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• Patients aged from ≥0 years of age at baseline
• In the opinion of the treating physician the patient has a clinical presentation, radiological, biochemical or genetic investigation results that support diagnosis of XLH
• Patient is not currently participating in an interventional clinical trial
• A patient who meets any of the following criteria at the enrolment visit (baseline) will be excluded from this XLH Registry

You may not qualify if…

• Patient or their legally designated representative does not have the cognitive capacity to provide informed consent.
• Patient is currently participating in an interventional clinical trial. Patients will be approached for inclusion into the registry once their involvement in the trial ends (including the completion of all trial follow up assessments).
• Participation in a Compassionate Use Program, Pre-commercial Program (i.e. Named Patient Sales, Nominative ATU) or Investigator Initiated Study does not preclude a patient from participation in this XLH Registry

Where it is running

• Hopitaux Universitaires de Geneve (HUG) — Geneva, Switzerland (enrolling)
• Centre Hopitalier Universitaire Vaudois — Lausanne, Switzerland (enrolling)
• Kantonsspital St. Gallen — Sankt Gallen, Switzerland (enrolling)
• Inselspital Bern — Bern, Switzerland (enrolling)
• Centre Hopitalier Universitaire Vaudois — Lausanne, Switzerland (enrolling)
• Klinik Hirslanden Zuerich — Zurich, Switzerland (enrolling)
• CHU de Liège — Liège, Belgium
• UZ Leuven — Leuven, Belgium
• Cliniques Universitaires Saint-Luc — Brussels, Belgium
• Fakultni nemocnice v Motole — Prague, Czechia
• Aalborg University Hospital — Aalborg, Denmark
• Århus Universitetshospital - Aarhus sygehus — Aarhus, Denmark
• Århus Universitetshospital — Aarhus, Denmark
• Hospital South West Jutland — Esbjerg, Denmark
• Children Hospital — Brno, Czechia
• Universitair Ziekenhuis Gent — Ghent, Belgium
• Groupe Hospitalier Pellegrin - Hôpital des Enfants — Bordeaux, France
• OUH — Odense, Denmark
• CHU de Lyon - Hôpital Femme Mere Enfant — Bron, France
• CHRU Lille — Lille, France
• Hopital Roger Salengro - CHU Lille — Lille, France
• Hopital Arnaud de Villeneuve — Montpellier, France
• CHU de Nantes — Nantes, France
• Hôpital Cochin — Paris, France
• UMHAT "SofiaMed", OOD — Sofia, Bulgaria

Full record on ClinicalTrials.gov

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