RecruitingNot Applicable

Registry for Patients With X-Linked Hypophosphatemia

Belgium1,343 participantsStarted 2017-09-12

Plain-language 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.

Who can participate

SexALL

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Inclusion criteria

✓. 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

Exclusion criteria

✕. 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

What they're measuring

Number of participants with treatment-related adverse events as assessed by CTCAE v4.0

Timeframe: 10 years

Trial details

NCT IDNCT03193476

SponsorKyowa Kirin Pharmaceutical Development Ltd

Sponsor typeINDUSTRY

Study typeOBSERVATIONAL

Primary completion2029-02-01

Contact for this trial

Clinical Trial Cordinator

+49 15114861167 KKI-IMA-XLH-Registry@kyowakirin.com

View on ClinicalTrials.gov More X-Linked Hypophosphatemia trials