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

NCT ID NCT03193476

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

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.

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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

Contacts and locations

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Study contacts

Contact

Phone: •••-•••-•••• Email: •••••@•••••

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

Contact Email: •••••@•••••

Contact

Contact Email: •••••@•••••

Contact
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

Contact Email: •••••@•••••
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

Contact Email: •••••@•••••
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

Contact Email: •••••@•••••
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

Contact Email: •••••@•••••
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

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