Registry for Patients With X-Linked Hypophosphatemia

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorKyowa Kirin Pharmaceutical Development Ltd

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 volunteers

Qualifiers

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

Design model

Other

Time perspective

Other

Treatments tested in this trial

Not listed

Trial groups

No trial groups listed

Trial outcomes

Primary outcomes

1

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

Time frame
10 years

Secondary outcomes

Other outcomes

Sponsors and contacts

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