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Registry for Patients With X-Linked Hypophosphatemia

Recruitingn/aAges any - anyAllKyowa Kirin Pharmaceutical Development Ltd
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In plain words

What the trial is, and whether it could suit you

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.

Sign in to get the eligibility rules as simple questions to take to your doctor.

📋 Eligibility rules (as published)
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
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What it tests

  • Not listed
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Where

118 sites
Hopital Universitaire des Enfants Reine Fabiola
Brussels, Belgium
Universitair Ziekenhuis Brussel
Brussels, Belgium
Cliniques Universitaires Saint-Luc
Brussels, Belgium
UZA
Edegem, Belgium
Universitair Ziekenhuis Gent
Ghent, Belgium
UZ Leuven
Leuven, Belgium
CHU de Liège
Liège, Belgium
SHATPD "Prof Ivan Mitev" EAD
Sofia, Bulgaria

…and 110 more on ClinicalTrials.gov.

🤝 Taking part is your choice, and you can leave at any time. Only the trial team can confirm you are eligible — always decide together with your own doctor.
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