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RecruitingNCT03193476Updated Jul 9, 2026

Registry for Patients With X-Linked Hypophosphatemia

An observational study in X-Linked Hypophosphatemia, sponsored by Kyowa Kirin Pharmaceutical Development Ltd. Recruiting at 118 sites in 20 countries. Per ClinicalTrials.gov, last updated 2026-07-09.

Sponsored by Kyowa Kirin Pharmaceutical Development Ltd (part of Kyowa Kirin Co., Ltd.) · Observational

From the registry’s dates

  • Started Sep 2017; still recruiting 9 years 1 month later.
Study type
Observational
Model
Other
Time perspective
Other
Enrollment
1,489
Sex
All
01

Study 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.

Read the detailed description

Methodology

This is an international, multicentre, prospective, non-interventional, observational Registry of patients with X-Linked hypophosphatemia (XLH). The objectives of this XLH Registry is to collect natural history data of XLH to characterise the treatment, progression and long-term outcomes of XLH in both adult and paediatric patients.

This XLH Registry will invite \& include patients with XLH, of all ages \& gender, irrespective of whether they are on, or not on, a treatment regimen for their XLH.

However, patients who are concurrently participating in an interventional clinical trial, including Investigator-Initiated Studies, are excluded from the XLH Registry, as per the Exclusion Criteria as set in the Protocol. These patients participating in an interventional clinical trial, when their involvement in the trial has ended, will be approached and invited to be included in the XLH Registry.

A subset of the XLH Registry data will be used to fulfil a Post-Authorisation Safety Study (PASS) as requested by the European Medicines Agency's (EMA's) Committee for Medical Products for Human Use (CHMP). Study centres which agree to participate in the PASS will be asked to solicit adverse events on enrolled patients. Not all centres are expected to participate in the PASS. Furthermore, as part of burosumab's Risk Management Plan (RMP), the majority of the safety concerns are being investigated in a Category 3 Post-Authorisation Safety Study (PASS), which uses the XLH Registry. The data source to conduct the PASS is the data collected in the XLH Registry.

All eligible patients at the participating clinics will be asked to participate in the XLH Registry:

  • Informed consent will be obtained from adult patients.
  • Parental informed consent for the inclusion of a child will be obtained from the child's legally designated representative in line with national guidance.
  • Assent will also be sought from children of applicable age in line with national guidance. In all cases the health professional responsible for enrolling the patient into the XLH Registry will assess the appropriateness of gaining assent from an individual at their discretion.

After the patient or legally designated representative has signed the informed consent, the patient data will be recorded in the XLH Registry, including baseline, retrospective and prospective data. Data will be collected using a web-based Electronic Data Capture (EDC) system. A patient identification number will be automatically generated by the system upon enrolment.

No pre-determined follow-up requirements will apply. However, physicians will be prompted to update patient data in the XLH Registry in relation to the patients' visits to the physician. Physicians will be reminded to update the XLH Registry at 12 months after the previous visit information was entered for a patient.

For those patients who attend clinic at more frequent intervals as part of their standard care, data for these visits will be entered at the 12-month intervals with an option to add multiple dates.

This is a prospective observational Registry and no additional interventions other than standard clinical practice are required by the protocol.

02

Conditions studied

  • X-Linked Hypophosphatemia

Keywords

  • Crysvita
  • Burosumab
  • X-linked Hypophosphatemia (XLH)
  • PHEX Gene Mutation
  • XLH Registry
03

In context

Familial Hypophosphatemic Rickets

49 studies on the registry are indexed under Familial Hypophosphatemic Rickets; 8 are open to participants now.

This study's planned enrollment of 1,489 is above the median of 50 across 16 observational studies indexed under Familial Hypophosphatemic Rickets.

Browse Familial Hypophosphatemic Rickets studies →

Lead sponsor

Kyowa Kirin Pharmaceutical Development Ltd is the lead sponsor of 13 studies on the registry; 1 is open to participants now.

Browse Kyowa Kirin Pharmaceutical Development Ltd studies →All Kyowa Kirin Co., Ltd. studies →

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
Child (0–17), Adult (18–64), Older adult (65+)
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

Patients with XLH independent of treatment regimen

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

A patient must meet the following criteria at the enrolment visit (baseline) to be eligible for inclusion into this XLH Registry

Inclusion criteria

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

Exclusion Criteria:

  1. Patient or their legally designated representative does not have the cognitive capacity to provide .
  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
Terms in these criteria, in plain language(1)

Underlined terms in the criteria open these too. Explained by clinicaltrials.gg, not part of the registry record. The study team decides who can take part.

Informed consent

Before you join, the study team explains what taking part involves — its purpose, what happens, the risks and possible benefits — and answers your questions, so you can decide freely. Consent is usually recorded on a form (the informed consent form, ICF) signed by you or, where the law allows, by someone legally authorised to decide for you.

You can keep asking questions during the study, you are told of new information that matters, and you can choose to leave at any time.

05

Study design

Observational model
Other
Time perspective
Other
Enrollment
1,489 participants (estimated)
Target follow-up
10 Years
Patient registry
Yes
06

What researchers measure

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

07

Study locations

6 of 118 sites recruiting
  • Hopital Universitaire des Enfants Reine Fabiola
    Brussels, 1020, Belgium
    Active, not recruiting

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  • Universitair Ziekenhuis Brussel
    Brussels, 1090, Belgium
    Active, not recruiting

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  • Cliniques Universitaires Saint-Luc
    Brussels, 1200, Belgium
    Active, not recruiting

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  • UZA
    Edegem, 2650, Belgium
    Active, not recruiting

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  • Universitair Ziekenhuis Gent
    Ghent, 9000, Belgium
    Active, not recruiting

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  • UZ Leuven
    Leuven, 3000, Belgium
    Active, not recruiting

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  • CHU de Liège
    Liège, 4000, Belgium
    Active, not recruiting

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  • SHATPD "Prof Ivan Mitev" EAD
    Sofia, 1606, Bulgaria
    Active, not recruiting

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  • UMHAT "SofiaMed", OOD
    Sofia, 1797, Bulgaria
    Active, not recruiting

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  • Children Hospital
    Brno, 625 00, Czechia
    Active, not recruiting

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  • Fakultni nemocnice v Motole
    Prague, 150 06, Czechia
    Active, not recruiting

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  • Aalborg University Hospital
    Aalborg, 9100, Denmark
    Active, not recruiting

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  • Århus Universitetshospital - Aarhus sygehus
    Aarhus, 8200, Denmark
    Active, not recruiting

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  • Århus Universitetshospital
    Aarhus, 8200, Denmark
    Active, not recruiting

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  • Hospital South West Jutland
    Esbjerg, 6700, Denmark
    Completed

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  • Rigshospitalet - Paediatric
    København Ø, 2100, Denmark
    Active, not recruiting

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  • Rigshospitalet
    København Ø, 2100, Denmark
    Completed

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  • OUH
    Odense, 5000, Denmark
    Active, not recruiting

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  • Groupe Hospitalier Pellegrin - Hôpital des Enfants
    Bordeaux, 33000, France
    Active, not recruiting

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  • CHU de Lyon - Hôpital Femme Mere Enfant
    Bron, 69677, France
    Active, not recruiting

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  • CHRU Lille
    Lille, 59037, France
    Active, not recruiting

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  • Hopital Roger Salengro - CHU Lille
    Lille, 59037, France
    Active, not recruiting

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  • Hopital Arnaud de Villeneuve
    Montpellier, 34295, France
    Active, not recruiting

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  • CHU de Nantes
    Nantes, 44000, France
    Active, not recruiting

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  • Hôpital Cochin
    Paris, 75679, France
    Active, not recruiting

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  • CHU Paris Sud - Hopital Bicêtre
    Paris, 94270, France
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  • Hôpital Bicêtre
    Paris, 94275, France
    Active, not recruiting

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  • "Hopital Pierre-Paul Riquet Centre de Rhumatologie"
    Toulouse, 31059, France
    Active, not recruiting

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  • Hopital Purpan
    Toulouse, 31059, France
    Active, not recruiting

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  • Klinikum Ernst-von-Bergmann Potsdam und Bad Belzig
    Bad Belzig, Germany
    Active, not recruiting

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  • Uniklinikum Bochum
    Bochum, 44791, Germany
    Withdrawn

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  • Uniklinikum Koeln
    Cologne, 50937, Germany
    Withdrawn

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  • MVZ Dr. Eberhard & Partner
    Dortmund, 44137, Germany
    Withdrawn

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  • Universitaetsklinikum Freiburg
    Freiburg im Breisgau, 79106, Germany
    Withdrawn

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  • Medizinische Hochschule Hannover
    Hanover, 30625, Germany
    Active, not recruiting

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  • Universitaetsklinikum
    Leipzig, 04103, Germany
    Active, not recruiting

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  • Hormon and Stoffwechselzentrum
    Mainz, 55122, Germany
    Active, not recruiting

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  • Semmelweis Egyetem
    Budapest, 1083, Hungary
    Active, not recruiting

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  • Semmelweis Egyetem
    Budapest, 1085, Hungary
    Active, not recruiting

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  • The Children's University Hospital
    Dublin, DO1 XD99, Ireland
    Active, not recruiting

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  • Rambam Health Care Center
    Haifa, 3109601, Israel
    Active, not recruiting

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  • Schneider Medical Center
    Petah Tikva, 4920235, Israel
    Active, not recruiting

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  • Sheba Medical Center
    Ramat Gan, 5265601, Israel
    Active, not recruiting

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  • Dana-Dwek Children's Hospital
    Tel Aviv, 64239, Israel
    Withdrawn

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  • Azienda Ospedaliero Universitaria Consorziale Policlinico di Bari
    Bari, 70124, Italy
    Active, not recruiting

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  • AO S. Pio G. Rumno
    Benevento, 82100, Italy
    Active, not recruiting

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  • Azienda Ospedaliera Universitaria Policlinico Sant'Orsola Malpighi
    Bologna, 40138, Italy
    Active, not recruiting

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  • Presidio Ospedaliero Di Summa Antonio Perrino
    Brindisi, 72100, Italy
    Active, not recruiting

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  • Azienda Ospedaliera Brotzu
    Cagliari, 09121, Italy
    Active, not recruiting

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  • Azienda Ospedaliera Universitaria Careggi
    Florence, 50134, Italy
    Active, not recruiting

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  • Istituto Giannina Gaslini-Ospedale Pediatrico IRCCS
    Genova, 16147, Italy
    Active, not recruiting

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  • ICOT-Istituto Chirurgico Ortopedico Traumatologico
    Latina, 04100, Italy
    Active, not recruiting

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  • Azienda Ospedaliera Universitaria Policlinico G. Martino
    Messina, 98125, Italy
    Active, not recruiting

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  • Ospedale San Raffaele - Adult
    Milan, 20132, Italy
    Active, not recruiting

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  • Ospedale San Raffaele
    Milan, 20132, Italy
    Active, not recruiting

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  • Azienda Ospedaliera di Padova
    Padova, 35128, Italy
    Active, not recruiting

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  • Azienda Ospedaliera di Padova
    Padua, 35100, Italy
    Active, not recruiting

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  • Istituto Auxologico Italiano -I.R.C.C.S.
    Piancavallo, 20145, Italy
    Active, not recruiting

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  • Stabilimento Ospedaliero Santa Chiara
    Pisa, 56100, Italy
    Active, not recruiting

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  • Ospedale Pediatrico Bambino Gesù
    Roma, 00165, Italy
    Active, not recruiting

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  • Azienda Ospedaliera Città della Salute e della Scienza di Torino (Presidio Sant'Anna)
    Torino, 10126, Italy
    Active, not recruiting

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  • Azienda Ospedaliero-Universitaria Città della Salute e della Scienza di Torino
    Torino, 10126, Italy
    Active, not recruiting

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  • I.R.C.C.S. Burlo Garofolo
    Trieste, 34137, Italy
    Active, not recruiting

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  • Children's Clinical University Hospital
    Riga, LV-1002, Latvia
    Active, not recruiting

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  • Universitair Medisch Centrum Groningen
    Groningen, 9713 GZ, Netherlands
    Active, not recruiting

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  • Oslo University Hospital
    Oslo, 0424, Norway
    Active, not recruiting

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  • Oslo Universitetssykehus HF, Ulleval
    Oslo, 0450, Norway
    Active, not recruiting

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  • St. Olav's University Hospital
    Trondheim, 7030, Norway
    Active, not recruiting

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  • Hospital Pediatrico de Coimbra
    Coimbra, 3030, Portugal
    Active, not recruiting

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  • Centro Hospitalar de Lisboa Central, E.P.E. - Hospital Dona Estefânia
    Lisbon, 1169-045, Portugal
    Active, not recruiting

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  • Centro Hospitalar de Lisboa Norte, E.P.E. - Hospital de Santa Maria
    Lisbon, 1649-035, Portugal
    Active, not recruiting

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  • Centro Hospitalar do Porto, E.P.E. - Hospital de Santo António
    Porto, 4099-001, Portugal
    Active, not recruiting

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  • Hospital de Sao Joao
    Porto, 4200-319, Portugal
    Active, not recruiting

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  • National Institute of Childrenś Health NUDCH
    Bratislava, 83340, Slovakia
    Active, not recruiting

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  • University Clinical Centre Ljubljana
    Ljubljana, Slovenia
    Active, not recruiting

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  • Hospital de Cruces
    Barakaldo, 48903, Spain
    Active, not recruiting

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  • Hospital Universitari Vall d'Hebron
    Barcelona, 08035, Spain
    Active, not recruiting

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  • Hospital Clinic de Barcelona
    Barcelona, 08036, Spain
    Active, not recruiting

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  • Hospital General Universitario Santa Lucía
    Cartagena, 30202, Spain
    Active, not recruiting

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  • Hospital Universitario Virgen de la Arrixaca
    El Palmar, 30120, Spain
    Active, not recruiting

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  • Hospital Sant Joan de Deu
    Esplugues de Llobregat, 08950, Spain
    Active, not recruiting

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  • Complejo Hospitalario Universitario Insular Materno-Infantil
    Las Palmas de Gran Canaria, 35016, Spain
    Active, not recruiting

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  • Hospital Infantil Universitario Niño Jesus
    Madrid, 28009, Spain
    Active, not recruiting

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  • Hospital Universitario Central de Asturias
    Oviedo, 33006, Spain
    Active, not recruiting

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  • Hospital Central de Asturias
    Oviedo, 33011, Spain
    Active, not recruiting

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  • Hospital Universitario Nuestra Señora de la Candelaria
    Santa Cruz de Tenerife, 38010, Spain
    Active, not recruiting

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  • Queen Silvia Children's Hospital
    Gothenburg, 416 85, Sweden
    Active, not recruiting

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  • Lund University
    Lund, 22185, Sweden
    Completed

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  • Karolinska Institute
    Stockholm, 112 81, Sweden
    Active, not recruiting

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  • Karolinska Institute (Pediatric)
    Stockholm, 171 77, Sweden
    Active, not recruiting

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  • Inselspital Bern
    Bern, 3010, Switzerland
    Recruiting
  • Hopitaux Universitaires de Geneve (HUG)
    Geneva, 1205, Switzerland
    Recruiting
  • Centre Hopitalier Universitaire Vaudois
    Lausanne, 1011, Switzerland
    Recruiting
  • Centre Hopitalier Universitaire Vaudois
    Lausanne, 1011, Switzerland
    Recruiting
  • Kantonsspital St. Gallen
    Sankt Gallen, 9007, Switzerland
    Recruiting
  • Klinik Hirslanden Zuerich
    Zurich, 8032, Switzerland
    Recruiting
  • Royal Belfast Hospital for Sick Children
    Belfast, BT12 6BE, United Kingdom
    Active, not recruiting

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  • Birmingham Children's Hospital
    Birmingham, B4 6NH, United Kingdom
    Active, not recruiting

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  • University Hospitals Bristol and Weston
    Bristol, BS2 8AE, United Kingdom
    Active, not recruiting

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  • Addenbrooke's Hospital
    Cambridge, CB2 2QQ, United Kingdom
    Active, not recruiting

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Showing the first 100 of 118 sites across 20 countries. Choose a country and city above to see the rest.

08

References and documents

Publications

  • Padidela R, Nilsson O, Makitie O, Beck-Nielsen S, Ariceta G, Schnabel D, Brandi ML, Boot A, Levtchenko E, Smyth M, Jandhyala R, Mughal Z. The international X-linked hypophosphataemia (XLH) registry (NCT03193476): rationale for and description of an international, observational study. Orphanet J Rare Dis. 2020 Jun 30;15(1):172. doi: 10.1186/s13023-020-01434-4. PubMed 32605590 ↗
  • Briot K, Lemoine S, Cortet B, Szafors P, Mehsen N, Couture G, Sandilands K, Rylands AJ, Ishii H, Bowden A, Dent JE, Kamenicky P. Health-related quality of life in French adults with X-linked hypophosphatemia: real-world data from the International XLH Registry. JBMR Plus. 2026 Mar 25;10(5):ziag050. doi: 10.1093/jbmrpl/ziag050. eCollection 2026 May. PubMed 42038817 ↗
  • Linglart A, Amouroux C, Gueorguieva I, Harambat J, Salles JP, Ertl DA, Sandilands K, Rylands A, Williams A, Ishii H, Bowden A, Varni JW, Bacchetta J. Health-related quality of life in French pediatric patients with X-linked hypophosphatemia: real-world data from the International XLH Registry. JBMR Plus. 2025 Aug 30;9(10):ziaf142. doi: 10.1093/jbmrpl/ziaf142. eCollection 2025 Oct. PubMed 41030383 ↗
  • Ariceta G, Beck-Nielsen SS, Boot AM, Brandi ML, Briot K, de Lucas Collantes C, Emma F, Giannini S, Haffner D, Keen R, Levtchenko E, Makitie O, Mughal MZ, Nilsson O, Schnabel D, Tripto-Shkolnik L, Liu J, Williams A, Wood S, Zillikens MC. The International X-Linked Hypophosphatemia (XLH) Registry: first interim analysis of baseline demographic, genetic and clinical data. Orphanet J Rare Dis. 2023 Sep 27;18(1):304. doi: 10.1186/s13023-023-02882-4. PubMed 37752558 ↗
  • Carpenter TO, Fukumoto S, Haffner D, Imel EA, Ozono K, Ishii H, Li Z, Sandilands K, Joos-Vandewalle P, Lee C, Kanematsu M, McCullough KP, Brandi ML. Advancing Patient Evidence in XLH (APEX): Baseline analysis of a global data unification program. Bone. 2025 Dec;201:117649. doi: 10.1016/j.bone.2025.117649. Epub 2025 Sep 15. PubMed 40962182 ↗
  • Brandi ML, Ariceta G, Beck-Nielsen SS, Boot AM, Briot K, de Lucas Collantes C, Emma F, Giannini S, Haffner D, Keen R, Levtchenko E, Makitie O, Nilsson O, Schnabel D, Tripto-Shkolnik L, Zillikens MC, Liu J, Tudor A, Mughal MZ. Post-authorisation safety study of burosumab use in paediatric, adolescent and adult patients with X-linked hypophosphataemia: rationale and description. Ther Adv Chronic Dis. 2022 Sep 5;13:20406223221117471. doi: 10.1177/20406223221117471. eCollection 2022. PubMed 36082134 ↗
09

Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on Jul 9, 2026, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT03193476
Lead sponsor
Kyowa Kirin Pharmaceutical Development Ltd
Collaborators
IQVIA Pty Ltd
Responsible party
Sponsor
First posted
Jun 20, 2017
Start date
Sep 12, 2017
Primary completion
Feb 1, 2029 (estimated)
Completion
Jul 1, 2029 (estimated)
Last update
Jul 9, 2026

Study contacts

Clinical Trial Cordinator
Contact
KKI-IMA-XLH-Registry@kyowakirin.com
+49 15114861167

Oversight

Data monitoring committee
No
FDA-regulated drug
No
FDA-regulated device
No
View the source record on ClinicalTrials.gov ↗

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