Cure My Disease

Don't miss your cure!

 Log in / Sign up

Global XLH registry aims to map the disease's journey from childhood to adulthood

NCT ID NCT03193476

Knowledge-focused Sponsor: Kyowa Kirin Pharmaceutical Development Ltd Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jul 09, 2026 · Last updated Jul 10, 2026 · Updated 1 time

Summary

This study is a worldwide registry that collects health information from people of all ages with X-Linked Hypophosphatemia (XLH), a rare genetic condition that affects bone growth and strength. Researchers will track how the disease progresses, what treatments patients receive, and what outcomes they experience over time. The goal is to better understand XLH and improve care for both children and adults living with the condition.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry could provide a clearer picture of how XLH progresses and responds to treatments over time, helping doctors improve care.
What could go wrong
This is an observational study, not a treatment trial. It collects data without testing any new therapy, so it cannot directly lead to a cure or new drug.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 1,489 people

The number the study aims to enrol. It can still change while the study runs.

Started

Sep 2017

Expected to finish

Jul 2029

An estimate. End dates often move.

Lead sponsor

A company

The lead sponsor is a pharmaceutical, biotech, or medical-device company.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with XLH independent of treatment regimen

Ages

Children (under 18), adults (18 to 64) and older adults (65 and over)

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

Get updates

Get notified about this study

Sign up to get updates when this study changes or when new studies for X-linked hypophosphatemia are added.

Our safety recommendation!

By submitting, you agree to our Terms of use

Conditions

The condition(s) this trial relates to.

X-linked dominant hypophosphatemic rickets X-linked hypophosphatemic rickets

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

X-linked hypophosphatemia

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    6 sites. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • "Hopital Pierre-Paul Riquet Centre de Rhumatologie"

    ACTIVE_NOT_RECRUITING

    Toulouse, 31059, France

  • AO S. Pio G. Rumno

    ACTIVE_NOT_RECRUITING

    Benevento, 82100, Italy

  • Aalborg University Hospital

    ACTIVE_NOT_RECRUITING

    Aalborg, 9100, Denmark

  • Addenbrooke's Hospital

    ACTIVE_NOT_RECRUITING

    Cambridge, CB2 2QQ, United Kingdom

  • Alder Hey Children's Hospital

    ACTIVE_NOT_RECRUITING

    Liverpool, L12 2AP, United Kingdom

  • Azienda Ospedaliera Brotzu

    ACTIVE_NOT_RECRUITING

    Cagliari, 09121, Italy

  • Azienda Ospedaliera Città della Salute e della Scienza di Torino (Presidio Sant'Anna)

    ACTIVE_NOT_RECRUITING

    Torino, 10126, Italy

  • Azienda Ospedaliera Universitaria Careggi

    ACTIVE_NOT_RECRUITING

    Florence, 50134, Italy

  • Azienda Ospedaliera Universitaria Policlinico G. Martino

    ACTIVE_NOT_RECRUITING

    Messina, 98125, Italy

  • Azienda Ospedaliera Universitaria Policlinico Sant'Orsola Malpighi

    ACTIVE_NOT_RECRUITING

    Bologna, 40138, Italy

  • Azienda Ospedaliera di Padova

    ACTIVE_NOT_RECRUITING

    Padova, 35128, Italy

  • Azienda Ospedaliera di Padova

    ACTIVE_NOT_RECRUITING

    Padua, 35100, Italy

  • Azienda Ospedaliero Universitaria Consorziale Policlinico di Bari

    ACTIVE_NOT_RECRUITING

    Bari, 70124, Italy

  • Azienda Ospedaliero-Universitaria Città della Salute e della Scienza di Torino

    ACTIVE_NOT_RECRUITING

    Torino, 10126, Italy

  • Birmingham Children's Hospital

    ACTIVE_NOT_RECRUITING

    Birmingham, B4 6NH, United Kingdom

  • CHRU Lille

    ACTIVE_NOT_RECRUITING

    Lille, 59037, France

  • CHU Paris Sud - Hopital Bicêtre

    ACTIVE_NOT_RECRUITING

    Paris, 94270, France

  • CHU de Liège

    ACTIVE_NOT_RECRUITING

    Liège, 4000, Belgium

  • CHU de Lyon - Hôpital Femme Mere Enfant

    ACTIVE_NOT_RECRUITING

    Bron, 69677, France

  • CHU de Nantes

    ACTIVE_NOT_RECRUITING

    Nantes, 44000, France

  • Centre Hopitalier Universitaire Vaudois

    RECRUITING

    Lausanne, 1011, Switzerland

  • Centre Hopitalier Universitaire Vaudois

    RECRUITING

    Lausanne, 1011, Switzerland

  • Centro Hospitalar de Lisboa Central, E.P.E. - Hospital Dona Estefânia

    ACTIVE_NOT_RECRUITING

    Lisbon, 1169-045, Portugal

  • Centro Hospitalar de Lisboa Norte, E.P.E. - Hospital de Santa Maria

    ACTIVE_NOT_RECRUITING

    Lisbon, 1649-035, Portugal

  • Centro Hospitalar do Porto, E.P.E. - Hospital de Santo António

    ACTIVE_NOT_RECRUITING

    Porto, 4099-001, Portugal

  • Children Hospital

    ACTIVE_NOT_RECRUITING

    Brno, 625 00, Czechia

  • Children's Clinical University Hospital

    ACTIVE_NOT_RECRUITING

    Riga, LV-1002, Latvia

  • Cliniques Universitaires Saint-Luc

    ACTIVE_NOT_RECRUITING

    Brussels, 1200, Belgium

  • Complejo Hospitalario Universitario Insular Materno-Infantil

    ACTIVE_NOT_RECRUITING

    Las Palmas de Gran Canaria, 35016, Spain

  • Dana-Dwek Children's Hospital

    WITHDRAWN

    Tel Aviv, 64239, Israel

  • Evelina Childrens Hospital

    ACTIVE_NOT_RECRUITING

    London, SE1 7EH, United Kingdom

  • Fakultni nemocnice v Motole

    ACTIVE_NOT_RECRUITING

    Prague, 150 06, Czechia

  • Gartnavel General Hospital

    ACTIVE_NOT_RECRUITING

    Glasgow, G12 0XH, United Kingdom

  • Great Ormond Street Hospital for Children

    ACTIVE_NOT_RECRUITING

    London, WC1N 3JH, United Kingdom

  • Groupe Hospitalier Pellegrin - Hôpital des Enfants

    ACTIVE_NOT_RECRUITING

    Bordeaux, 33000, France

  • Hopital Arnaud de Villeneuve

    ACTIVE_NOT_RECRUITING

    Montpellier, 34295, France

  • Hopital Purpan

    ACTIVE_NOT_RECRUITING

    Toulouse, 31059, France

  • Hopital Roger Salengro - CHU Lille

    ACTIVE_NOT_RECRUITING

    Lille, 59037, France

  • Hopital Universitaire des Enfants Reine Fabiola

    ACTIVE_NOT_RECRUITING

    Brussels, 1020, Belgium

  • Hopitaux Universitaires de Geneve (HUG)

    RECRUITING

    Geneva, 1205, Switzerland

  • Hormon and Stoffwechselzentrum

    ACTIVE_NOT_RECRUITING

    Mainz, 55122, Germany

  • Hospital Central de Asturias

    ACTIVE_NOT_RECRUITING

    Oviedo, 33011, Spain

  • Hospital Clinic de Barcelona

    ACTIVE_NOT_RECRUITING

    Barcelona, 08036, Spain

  • Hospital General Universitario Santa Lucía

    ACTIVE_NOT_RECRUITING

    Cartagena, 30202, Spain

  • Hospital Infantil Universitario Niño Jesus

    ACTIVE_NOT_RECRUITING

    Madrid, 28009, Spain

  • Hospital Pediatrico de Coimbra

    ACTIVE_NOT_RECRUITING

    Coimbra, 3030, Portugal

  • Hospital Sant Joan de Deu

    ACTIVE_NOT_RECRUITING

    Esplugues de Llobregat, 08950, Spain

  • Hospital South West Jutland

    COMPLETED

    Esbjerg, 6700, Denmark

  • Hospital Universitari Vall d'Hebron

    ACTIVE_NOT_RECRUITING

    Barcelona, 08035, Spain

  • Hospital Universitario Central de Asturias

    ACTIVE_NOT_RECRUITING

    Oviedo, 33006, Spain

  • Hospital Universitario Nuestra Señora de la Candelaria

    ACTIVE_NOT_RECRUITING

    Santa Cruz de Tenerife, 38010, Spain

  • Hospital Universitario Virgen de la Arrixaca

    ACTIVE_NOT_RECRUITING

    El Palmar, 30120, Spain

  • Hospital de Cruces

    ACTIVE_NOT_RECRUITING

    Barakaldo, 48903, Spain

  • Hospital de Sao Joao

    ACTIVE_NOT_RECRUITING

    Porto, 4200-319, Portugal

  • Hôpital Bicêtre

    ACTIVE_NOT_RECRUITING

    Paris, 94275, France

  • Hôpital Cochin

    ACTIVE_NOT_RECRUITING

    Paris, 75679, France

  • I.R.C.C.S. Burlo Garofolo

    ACTIVE_NOT_RECRUITING

    Trieste, 34137, Italy

  • ICOT-Istituto Chirurgico Ortopedico Traumatologico

    ACTIVE_NOT_RECRUITING

    Latina, 04100, Italy

  • Inselspital Bern

    RECRUITING

    Bern, 3010, Switzerland

  • Istituto Auxologico Italiano -I.R.C.C.S.

    ACTIVE_NOT_RECRUITING

    Piancavallo, 20145, Italy

  • Istituto Giannina Gaslini-Ospedale Pediatrico IRCCS

    ACTIVE_NOT_RECRUITING

    Genova, 16147, Italy

  • Kantonsspital St. Gallen

    RECRUITING

    Sankt Gallen, 9007, Switzerland

  • Karolinska Institute

    ACTIVE_NOT_RECRUITING

    Stockholm, 112 81, Sweden

  • Karolinska Institute (Pediatric)

    ACTIVE_NOT_RECRUITING

    Stockholm, 171 77, Sweden

  • Klinik Hirslanden Zuerich

    RECRUITING

    Zurich, 8032, Switzerland

  • Klinikum Ernst-von-Bergmann Potsdam und Bad Belzig

    ACTIVE_NOT_RECRUITING

    Bad Belzig, Germany

  • Leeds General Infirmary

    ACTIVE_NOT_RECRUITING

    Leeds, LS1 3EX, United Kingdom

  • Lund University

    COMPLETED

    Lund, 22185, Sweden

  • MVZ Dr. Eberhard & Partner

    WITHDRAWN

    Dortmund, 44137, Germany

  • Medizinische Hochschule Hannover

    ACTIVE_NOT_RECRUITING

    Hanover, 30625, Germany

  • National Hospital for Neurology and Neurosurgery

    ACTIVE_NOT_RECRUITING

    London, NW1 2PG, United Kingdom

  • National Institute of Childrenś Health NUDCH

    ACTIVE_NOT_RECRUITING

    Bratislava, 83340, Slovakia

  • OUH

    ACTIVE_NOT_RECRUITING

    Odense, 5000, Denmark

  • Oslo Universitetssykehus HF, Ulleval

    ACTIVE_NOT_RECRUITING

    Oslo, 0450, Norway

  • Oslo University Hospital

    ACTIVE_NOT_RECRUITING

    Oslo, 0424, Norway

  • Ospedale Pediatrico Bambino Gesù

    ACTIVE_NOT_RECRUITING

    Roma, 00165, Italy

  • Ospedale San Raffaele

    ACTIVE_NOT_RECRUITING

    Milan, 20132, Italy

  • Ospedale San Raffaele - Adult

    ACTIVE_NOT_RECRUITING

    Milan, 20132, Italy

  • Oxford University Hospital NHS Trust

    ACTIVE_NOT_RECRUITING

    Oxford, OX3 7LD, United Kingdom

  • Presidio Ospedaliero Di Summa Antonio Perrino

    ACTIVE_NOT_RECRUITING

    Brindisi, 72100, Italy

  • Queen Elizabeth University Hospital

    ACTIVE_NOT_RECRUITING

    Glasgow, G12 0YN, United Kingdom

  • Queen Silvia Children's Hospital

    ACTIVE_NOT_RECRUITING

    Gothenburg, 416 85, Sweden

  • Raigmore Hospital

    ACTIVE_NOT_RECRUITING

    Inverness, IV2 3UJ, United Kingdom

  • Rambam Health Care Center

    ACTIVE_NOT_RECRUITING

    Haifa, 3109601, Israel

  • Rigshospitalet

    COMPLETED

    København Ø, 2100, Denmark

  • Rigshospitalet - Paediatric

    ACTIVE_NOT_RECRUITING

    København Ø, 2100, Denmark

  • Royal Belfast Hospital for Sick Children

    ACTIVE_NOT_RECRUITING

    Belfast, BT12 6BE, United Kingdom

  • Royal Hospital for Sick Children and Young People

    ACTIVE_NOT_RECRUITING

    Edinburgh, EH9 1LF, United Kingdom

  • Royal Liverpool University Hospital

    ACTIVE_NOT_RECRUITING

    Liverpool, L7 8XP, United Kingdom

  • Royal Manchester Children's Hospital

    ACTIVE_NOT_RECRUITING

    Manchester, M13 9WL, United Kingdom

  • SHATPD "Prof Ivan Mitev" EAD

    ACTIVE_NOT_RECRUITING

    Sofia, 1606, Bulgaria

  • Schneider Medical Center

    ACTIVE_NOT_RECRUITING

    Petah Tikva, 4920235, Israel

  • Semmelweis Egyetem

    ACTIVE_NOT_RECRUITING

    Budapest, 1083, Hungary

  • Semmelweis Egyetem

    ACTIVE_NOT_RECRUITING

    Budapest, 1085, Hungary

  • Sheba Medical Center

    ACTIVE_NOT_RECRUITING

    Ramat Gan, 5265601, Israel

  • Sheffield Childrens Hospital

    ACTIVE_NOT_RECRUITING

    Sheffield, S10 2RX, United Kingdom

  • Sheffield Teaching Hospitals

    ACTIVE_NOT_RECRUITING

    Sheffield, S5 7AU, United Kingdom

  • Southampton General Hospital

    ACTIVE_NOT_RECRUITING

    Southampton, SO16 6YD, United Kingdom

  • St. Olav's University Hospital

    ACTIVE_NOT_RECRUITING

    Trondheim, 7030, Norway

  • Stabilimento Ospedaliero Santa Chiara

    ACTIVE_NOT_RECRUITING

    Pisa, 56100, Italy

  • Stanmore Royal Orthopaedic Hospital

    ACTIVE_NOT_RECRUITING

    Stanmore, HA7 4LP, United Kingdom

  • The Children's University Hospital

    ACTIVE_NOT_RECRUITING

    Dublin, DO1 XD99, Ireland

  • UMHAT "SofiaMed", OOD

    ACTIVE_NOT_RECRUITING

    Sofia, 1797, Bulgaria

  • UZ Leuven

    ACTIVE_NOT_RECRUITING

    Leuven, 3000, Belgium

  • UZA

    ACTIVE_NOT_RECRUITING

    Edegem, 2650, Belgium

  • Uniklinikum Bochum

    WITHDRAWN

    Bochum, 44791, Germany

  • Uniklinikum Koeln

    WITHDRAWN

    Cologne, 50937, Germany

  • Universitaetsklinikum

    ACTIVE_NOT_RECRUITING

    Leipzig, 04103, Germany

  • Universitaetsklinikum Freiburg

    WITHDRAWN

    Freiburg im Breisgau, 79106, Germany

  • Universitair Medisch Centrum Groningen

    ACTIVE_NOT_RECRUITING

    Groningen, 9713 GZ, Netherlands

  • Universitair Ziekenhuis Brussel

    ACTIVE_NOT_RECRUITING

    Brussels, 1090, Belgium

  • Universitair Ziekenhuis Gent

    ACTIVE_NOT_RECRUITING

    Ghent, 9000, Belgium

  • University Clinical Centre Ljubljana

    ACTIVE_NOT_RECRUITING

    Ljubljana, Slovenia

  • University Hospital of Wales

    ACTIVE_NOT_RECRUITING

    Cardiff, CF14 4XW, United Kingdom

  • University Hospitals Bristol and Weston

    ACTIVE_NOT_RECRUITING

    Bristol, BS2 8AE, United Kingdom

  • Western General Hospital

    ACTIVE_NOT_RECRUITING

    Edinburgh, EH4 2XU, United Kingdom

  • Århus Universitetshospital

    ACTIVE_NOT_RECRUITING

    Aarhus, 8200, Denmark

  • Århus Universitetshospital - Aarhus sygehus

    ACTIVE_NOT_RECRUITING

    Aarhus, 8200, Denmark

More trials for these conditions

Other studies related to the condition(s) this trial covers.