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Clinical Trials in the UK / NCT03193476
Recruiting Observational

Registry for Patients With X-Linked Hypophosphatemia

NCT03193476 · tracked via the Priya Life Science UK tracker
Sponsor
Kyowa Kirin Pharmaceutical Development Ltd
Phase
Observational
Started
2017-09-12
Last updated
2026-07-09

Condition(s) studied

X-Linked Hypophosphatemia

Study summary

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.

Eligibility

Sex
ALL
Min age
Max age
Healthy volunteers
No
A patient must meet the following criteria at the enrolment visit (baseline) to be eligible for inclusion into this XLH Registry Inclusion Criteria: 1. Patients aged from ≥0 years of age at baseline 2. In the opinion of the treating physician the patient has a clinical presentation, radiological, biochemical or genetic investigation results that support diagnosis of XLH 3. 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 Exclusion Criteria: 1. Patient or their legally designated representative does not have the cognitive capacity to provide informed consent. 2. 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). 3. 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

Primary outcome measure(s)

Trial sites (118)

FacilityCityRegionStatus
Hopital Universitaire des Enfants Reine Fabiola Brussels Belgium Active Not Recruiting
Universitair Ziekenhuis Brussel Brussels Belgium Active Not Recruiting
Cliniques Universitaires Saint-Luc Brussels Belgium Active Not Recruiting
UZA Edegem Belgium Active Not Recruiting
Universitair Ziekenhuis Gent Ghent Belgium Active Not Recruiting
UZ Leuven Leuven Belgium Active Not Recruiting
CHU de Liège Liège Belgium Active Not Recruiting
SHATPD "Prof Ivan Mitev" EAD Sofia Bulgaria Active Not Recruiting
UMHAT "SofiaMed", OOD Sofia Bulgaria Active Not Recruiting
Children Hospital Brno Czechia Active Not Recruiting
Fakultni nemocnice v Motole Prague Czechia Active Not Recruiting
Aalborg University Hospital Aalborg Denmark Active Not Recruiting
Århus Universitetshospital - Aarhus sygehus Aarhus Denmark Active Not Recruiting
Århus Universitetshospital Aarhus Denmark Active Not Recruiting
Hospital South West Jutland Esbjerg Denmark Completed
Rigshospitalet - Paediatric København Ø Denmark Active Not Recruiting
Rigshospitalet København Ø Denmark Completed
OUH Odense Denmark Active Not Recruiting
Groupe Hospitalier Pellegrin - Hôpital des Enfants Bordeaux France Active Not Recruiting
CHU de Lyon - Hôpital Femme Mere Enfant Bron France Active Not Recruiting
CHRU Lille Lille France Active Not Recruiting
Hopital Roger Salengro - CHU Lille Lille France Active Not Recruiting
Hopital Arnaud de Villeneuve Montpellier France Active Not Recruiting
CHU de Nantes Nantes France Active Not Recruiting
Hôpital Cochin Paris France Active Not Recruiting
CHU Paris Sud - Hopital Bicêtre Paris France Active Not Recruiting
Hôpital Bicêtre Paris France Active Not Recruiting
"Hopital Pierre-Paul Riquet Centre de Rhumatologie" Toulouse France Active Not Recruiting
Hopital Purpan Toulouse France Active Not Recruiting
Klinikum Ernst-von-Bergmann Potsdam und Bad Belzig Bad Belzig Germany Active Not Recruiting
Uniklinikum Bochum Bochum Germany Withdrawn
Uniklinikum Koeln Cologne Germany Withdrawn
MVZ Dr. Eberhard & Partner Dortmund Germany Withdrawn
Universitaetsklinikum Freiburg Freiburg im Breisgau Germany Withdrawn
Medizinische Hochschule Hannover Hanover Germany Active Not Recruiting
Universitaetsklinikum Leipzig Germany Active Not Recruiting
Hormon and Stoffwechselzentrum Mainz Germany Active Not Recruiting
Semmelweis Egyetem Budapest Hungary Active Not Recruiting
Semmelweis Egyetem Budapest Hungary Active Not Recruiting
The Children's University Hospital Dublin Ireland Active Not Recruiting

+ 78 more sites — see the full list on the official registry below.

Official registry record

This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.

View NCT03193476 on ClinicalTrials.gov ↗ ← All trials in the UK