Registry for patients with X-Linked Hypophosphatemia

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This international, multicentre, prospective registry collects data on patients with X-Linked hypophosphatemia (XLH) to characterize their treatment, disease progression, and long-term outcomes. It includes patients of all ages and genders, regardless of their treatment status. The registry aims to gather natural history data and may also contribute to a Post-Authorisation Safety Study (PASS) to monitor safety concerns related to burosumab. Patients currently involved in interventional clinical trials are excluded until their participation concludes.

Why it matters

Who can join: the full rules

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

Where it's running

• Inselspital Bern
  Bern, Switzerland Recruiting
• Hopitaux Universitaires de Geneve (HUG)
  Geneva, Switzerland Recruiting
• Centre Hopitalier Universitaire Vaudois
  Lausanne, Switzerland Recruiting
• Centre Hopitalier Universitaire Vaudois
  Lausanne, Switzerland Recruiting
• Kantonsspital St. Gallen
  Sankt Gallen, Switzerland Recruiting
• Klinik Hirslanden Zuerich
  Zurich, Switzerland Recruiting

+68 more sites. See ClinicalTrials.gov for the full list.

Study contacts

• Study coordinator: Clinical Trial Cordinator
• Email: KKI-IMA-XLH-Registry@kyowakirin.com
• Phone: +49 15114861167

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

• Phosphorus-31 Imaging to Explore Phosphate Diabetes in XLH

  This study tests phosphorus-31 spectroscopy to see if muscle and phosphate levels differ in people with phosphate diabetes (like XLH) compared with healthy peers.

  Recruiting Hospices Civils de Lyon · Bron and 1 other locations · NCT06921720

• Testing KK8123 in adults with X-linked hypophosphatemia

  This study is testing a new treatment called KK8123 to see if it can safely help adults with X-linked hypophosphatemia, a rare bone disease.

  Recruiting at 9 sites Phase 1/2 Kyowa Kirin Co., Ltd. · San Francisco, California and 9 other locations · NCT06525636

• KK2430 in people with hematologic cancers

  This study tests KK2430 in adults with blood-related cancers to see if it is safe and how it behaves in the body, with the goal of understanding its potential to help in treatment.

  Recruiting Phase 1/2 Kyowa Kirin Co., Ltd. · Greenville, South Carolina · NCT07629726

• Ziftomenib for relapsed/refractory NPM1-mutated AML in Japanese adults

  This study will test whether ziftomenib can help adults with relapsed or refractory NPM1-mutated AML who have few other options.

  Recruiting at 15 sites Phase 2 Kyowa Kirin Co., Ltd. · Chiba and 19 other locations · NCT07623616

• First-in-human test of KK2223 in adults with relapsed or refractory T-cell lymphoma

  This study tests KK2223 in adults whose T-cell lymphoma has come back or not responded to prior treatment to see if it is safe and how it behaves in the body.

  Recruiting at 4 sites Phase 1 Kyowa Kirin Co., Ltd. · Duarte, California and 21 other locations · NCT07192471

• Poteligeo (mogamulizumab) for adults with mycosis fungoides or Sézary syndrome

  This project will try Poteligeo (mogamulizumab) in adults with mycosis fungoides or Sézary syndrome who have had at least one prior systemic therapy to see how safe and effective it is in routine care in Korea.

  Recruiting at 5 sites Kyowa Kirin Co., Ltd. · Busan, Busan Metropolitan City and 5 other locations · NCT07132567

How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.