An International, Multicentre, Prospective, Non-interventional Observational Registry for Patients With X-Linked Hypophosphatemia (XLH)
Status: Recruiting
Location: See all (116) locations...
Study Type: Observational
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.
Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:
• Patients aged from ≥0 years of age at baseline
• In the opinion of the treating physician the patient has a clinical presentation, radiological, biochemical or genetic investigation results that support diagnosis of XLH
• 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
Locations
Other Locations
Belgium
Cliniques Universitaires Saint-Luc
RECRUITING
Brussels
Hopital Universitaire des Enfants Reine Fabiola
RECRUITING
Brussels
Universitair Ziekenhuis Brussel
RECRUITING
Brussels
UZA
RECRUITING
Edegem
Universitair Ziekenhuis Gent
RECRUITING
Ghent
UZ Leuven
RECRUITING
Leuven
CHU de Liège
RECRUITING
Liège
Bulgaria
SHATPD Prof Ivan Mitev EAD
ACTIVE_NOT_RECRUITING
Sofia
UMHAT SofiaMed, OOD
ACTIVE_NOT_RECRUITING
Sofia
Denmark
Aalborg University Hospital
ACTIVE_NOT_RECRUITING
Aalborg
Århus Universitetshospital
ACTIVE_NOT_RECRUITING
Aarhus
Århus Universitetshospital - Aarhus sygehus
ACTIVE_NOT_RECRUITING
Aarhus
Hospital South West Jutland
COMPLETED
Esbjerg
Rigshospitalet
COMPLETED
København Ø
Rigshospitalet - Paediatric
ACTIVE_NOT_RECRUITING
København Ø
OUH
ACTIVE_NOT_RECRUITING
Odense
France
Groupe Hospitalier Pellegrin - Hôpital des Enfants
ACTIVE_NOT_RECRUITING
Bordeaux
CHU de Lyon - Hôpital Femme Mere Enfant
ACTIVE_NOT_RECRUITING
Bron
CHRU Lille
ACTIVE_NOT_RECRUITING
Lille
Hopital Roger Salengro - CHU Lille
ACTIVE_NOT_RECRUITING
Lille
Hopital Arnaud de Villeneuve
ACTIVE_NOT_RECRUITING
Montpellier
CHU de Nantes
NOT_YET_RECRUITING
Nantes
CHU Paris Sud - Hopital Bicêtre
ACTIVE_NOT_RECRUITING
Paris
Hôpital Bicêtre
ACTIVE_NOT_RECRUITING
Paris
Hôpital Cochin
ACTIVE_NOT_RECRUITING
Paris
Hopital Pierre-Paul Riquet Centre de Rhumatologie
ACTIVE_NOT_RECRUITING
Toulouse
Hopital Purpan
ACTIVE_NOT_RECRUITING
Toulouse
Germany
Klinikum Ernst-von-Bergmann Potsdam und Bad Belzig
ACTIVE_NOT_RECRUITING
Bad Belzig
Uniklinikum Bochum
WITHDRAWN
Bochum
Uniklinikum Koeln
WITHDRAWN
Cologne
MVZ Dr. Eberhard & Partner
WITHDRAWN
Dortmund
Universitaetsklinikum Freiburg
WITHDRAWN
Freiburg Im Breisgau
Medizinische Hochschule Hannover
ACTIVE_NOT_RECRUITING
Hanover
Universitaetsklinikum
ACTIVE_NOT_RECRUITING
Leipzig
Hormon and Stoffwechselzentrum
ACTIVE_NOT_RECRUITING
Mainz
Hungary
Semmelweis Egyetem
ACTIVE_NOT_RECRUITING
Budapest
Semmelweis Egyetem
ACTIVE_NOT_RECRUITING
Budapest
Ireland
The Children's University Hospital
ACTIVE_NOT_RECRUITING
Dublin
Israel
Rambam Health Care Center
ACTIVE_NOT_RECRUITING
Haifa
Schneider Medical Center
ACTIVE_NOT_RECRUITING
Petah Tikva
Sheba Medical Center
ACTIVE_NOT_RECRUITING
Ramat Gan
Dana-Dwek Children's Hospital
WITHDRAWN
Tel Aviv
Italy
Azienda Ospedaliero Universitaria Consorziale Policlinico di Bari
ACTIVE_NOT_RECRUITING
Bari
AO S. Pio G. Rumno
ACTIVE_NOT_RECRUITING
Benevento
Azienda Ospedaliera Universitaria Policlinico Sant'Orsola Malpighi
ACTIVE_NOT_RECRUITING
Bologna
Presidio Ospedaliero Di Summa Antonio Perrino
ACTIVE_NOT_RECRUITING
Brindisi
Azienda Ospedaliera Brotzu
ACTIVE_NOT_RECRUITING
Cagliari
Azienda Ospedaliera Universitaria Careggi
ACTIVE_NOT_RECRUITING
Florence
Istituto Giannina Gaslini-Ospedale Pediatrico IRCCS
ACTIVE_NOT_RECRUITING
Genova
ICOT-Istituto Chirurgico Ortopedico Traumatologico
NOT_YET_RECRUITING
Latina
Azienda Ospedaliera Universitaria Policlinico G. Martino
ACTIVE_NOT_RECRUITING
Messina
Ospedale San Raffaele
ACTIVE_NOT_RECRUITING
Milan
Ospedale San Raffaele - Adult
ACTIVE_NOT_RECRUITING
Milan
Azienda Ospedaliera di Padova
ACTIVE_NOT_RECRUITING
Padua
Azienda Ospedaliera di Padova
ACTIVE_NOT_RECRUITING
Padua
Istituto Auxologico Italiano -I.R.C.C.S.
ACTIVE_NOT_RECRUITING
Piancavallo
Stabilimento Ospedaliero Santa Chiara
ACTIVE_NOT_RECRUITING
Pisa
Ospedale Pediatrico Bambino Gesù
ACTIVE_NOT_RECRUITING
Roma
Azienda Ospedaliera Città della Salute e della Scienza di Torino (Presidio Sant'Anna)
NOT_YET_RECRUITING
Torino
Azienda Ospedaliero-Universitaria Città della Salute e della Scienza di Torino
ACTIVE_NOT_RECRUITING
Torino
I.R.C.C.S. Burlo Garofolo
ACTIVE_NOT_RECRUITING
Trieste
Latvia
Children's Clinical University Hospital
ACTIVE_NOT_RECRUITING
Riga
Netherlands
Universitair Medisch Centrum Groningen
ACTIVE_NOT_RECRUITING
Groningen
Norway
Oslo Universitetssykehus HF, Ulleval
ACTIVE_NOT_RECRUITING
Oslo
Oslo University Hospital
ACTIVE_NOT_RECRUITING
Oslo
St. Olav's University Hospital
ACTIVE_NOT_RECRUITING
Trondheim
Portugal
Hospital Pediatrico de Coimbra
ACTIVE_NOT_RECRUITING
Coimbra
Centro Hospitalar de Lisboa Central, E.P.E. - Hospital Dona Estefânia
ACTIVE_NOT_RECRUITING
Lisbon
Centro Hospitalar de Lisboa Norte, E.P.E. - Hospital de Santa Maria
ACTIVE_NOT_RECRUITING
Lisbon
Centro Hospitalar do Porto, E.P.E. - Hospital de Santo António
ACTIVE_NOT_RECRUITING
Porto
Hospital de Sao Joao
ACTIVE_NOT_RECRUITING
Porto
Slovakia
National Institute of Childrenś Health NUDCH
ACTIVE_NOT_RECRUITING
Bratislava
Slovenia
University Clinical Centre Ljubljana
ACTIVE_NOT_RECRUITING
Ljubljana
Spain
Hospital de Cruces
ACTIVE_NOT_RECRUITING
Barakaldo
Hospital Clinic de Barcelona
ACTIVE_NOT_RECRUITING
Barcelona
Hospital Universitari Vall d'Hebron
ACTIVE_NOT_RECRUITING
Barcelona
Hospital General Universitario Santa Lucía
ACTIVE_NOT_RECRUITING
Cartagena
Hospital Universitario Virgen de la Arrixaca
ACTIVE_NOT_RECRUITING
El Palmar
Hospital Sant Joan de Deu
ACTIVE_NOT_RECRUITING
Esplugues De Llobregat
Complejo Hospitalario Universitario Insular Materno-Infantil
ACTIVE_NOT_RECRUITING
Las Palmas De Gran Canaria
Hospital Infantil Universitario Niño Jesus
ACTIVE_NOT_RECRUITING
Madrid
Hospital Central de Asturias
ACTIVE_NOT_RECRUITING
Oviedo
Hospital Universitario Central de Asturias
ACTIVE_NOT_RECRUITING
Oviedo
Hospital Universitario Nuestra Señora de la Candelaria
ACTIVE_NOT_RECRUITING
Santa Cruz De Tenerife
Sweden
Queen Silvia Children's Hospital
ACTIVE_NOT_RECRUITING
Gothenburg
Lund University
COMPLETED
Lund
Karolinska Institute
ACTIVE_NOT_RECRUITING
Stockholm
Karolinska Institute (Pediatric)
ACTIVE_NOT_RECRUITING
Stockholm
Switzerland
Inselspital Bern
RECRUITING
Bern
Hopitaux Universitaires de Geneve (HUG)
RECRUITING
Geneva
Centre Hopitalier Universitaire Vaudois
RECRUITING
Lausanne
Centre Hopitalier Universitaire Vaudois
RECRUITING
Lausanne
Kantonsspital St. Gallen
RECRUITING
Sankt Gallen
Klinik Hirslanden Zuerich
RECRUITING
Zurich
United Kingdom
Royal Belfast Hospital for Sick Children
ACTIVE_NOT_RECRUITING
Belfast
Birmingham Children's Hospital
ACTIVE_NOT_RECRUITING
Birmingham
University Hospitals Bristol and Weston
ACTIVE_NOT_RECRUITING
Bristol
Addenbrooke's Hospital
ACTIVE_NOT_RECRUITING
Cambridge
University Hospital of Wales
ACTIVE_NOT_RECRUITING
Cardiff
Royal Hospital for Sick Children and Young People
ACTIVE_NOT_RECRUITING
Edinburgh
Western General Hospital
ACTIVE_NOT_RECRUITING
Edinburgh
Gartnavel General Hospital
ACTIVE_NOT_RECRUITING
Glasgow
Queen Elizabeth University Hospital
ACTIVE_NOT_RECRUITING
Glasgow
Raigmore Hospital
ACTIVE_NOT_RECRUITING
Inverness
Leeds General Infirmary
ACTIVE_NOT_RECRUITING
Leeds
Alder Hey Children's Hospital
ACTIVE_NOT_RECRUITING
Liverpool
Royal Liverpool University Hospital
ACTIVE_NOT_RECRUITING
Liverpool
Evelina Childrens Hospital
ACTIVE_NOT_RECRUITING
London
Great Ormond Street Hospital for Children
ACTIVE_NOT_RECRUITING
London
National Hospital for Neurology and Neurosurgery
ACTIVE_NOT_RECRUITING
London
Royal Manchester Children's Hospital
ACTIVE_NOT_RECRUITING
Manchester
Oxford University Hospital NHS Trust
ACTIVE_NOT_RECRUITING
Oxford
Sheffield Childrens Hospital
ACTIVE_NOT_RECRUITING
Sheffield
Sheffield Teaching Hospitals
ACTIVE_NOT_RECRUITING
Sheffield
Southampton General Hospital
ACTIVE_NOT_RECRUITING
Southampton
Stanmore Royal Orthopaedic Hospital
ACTIVE_NOT_RECRUITING
Stanmore
Contact Information
Primary
Clinical Trial Cordinator
KKI-IMA-XLH-Registry@kyowakirin.com
+49 15114861167
Time Frame
Start Date: 2017-09-12
Estimated Completion Date: 2029-07-01
Participants
Target number of participants: 1343
Related Therapeutic Areas
Sponsors
Collaborators: Iqvia Pty Ltd
Leads: Kyowa Kirin Pharmaceutical Development Ltd