RecruitingNCT03193476
Registry for Patients With X-Linked Hypophosphatemia
An International, Multicentre, Prospective, Non-interventional Observational Registry for Patients With X-Linked Hypophosphatemia (XLH)
Sponsor
Kyowa Kirin Pharmaceutical Development Ltd
Enrollment
1,343 participants
Start Date
Sep 12, 2017
Study Type
OBSERVATIONAL
Conditions
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
Inclusion Criteria5
- A patient must meet the following criteria at the enrolment visit (baseline) to be eligible for inclusion into this XLH Registry
- 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
Exclusion Criteria3
- 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
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Locations(118)
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NCT03193476