About this trial
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 criteria
This trial does not accept healthy volunteersQualifiers
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
Disqualifiers
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
Trial population
Patients with XLH independent of treatment regimen
Trial design
Other
Other
Treatments tested in this trial
Not listed
Trial groups
Trial outcomes
Primary outcomes
Number of participants with treatment-related adverse events as assessed by CTCAE v4.0
Number of participants with treatment-related adverse events as assessed by CTCAE v4.0
Sponsors and contacts
Click on the lead sponsor to view all of their trials.
Kyowa Kirin Pharmaceutical Development Ltd
Lead sponsor
IQVIA Pty Ltd
Collaborator