Registry for Patients With X-Linked Hypophosphatemia

Launched by KYOWA KIRIN PHARMACEUTICAL DEVELOPMENT LTD · Jun 17, 2017

Keywords

ClinConnect Summary

This clinical trial is called the Registry for Patients With X-Linked Hypophosphatemia (XLH). It aims to gather information about how XLH affects patients, including their treatment, progression of the condition, and long-term outcomes. This registry is open to people of all ages, from newborns to adults, who have been diagnosed with XLH based on their doctor’s assessment and relevant tests. To participate, individuals must not be involved in any other clinical trials.

If you or a family member qualifies for this registry, you'll be asked to provide some information about your health and treatment. This study is observational, meaning you won’t receive any experimental treatments, but your experiences and health data will contribute to a better understanding of XLH. The goal is to help improve the care and support available for others living with this condition in the future.

Gender

ALL

Eligibility criteria

• • 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