Actively Recruiting
Registry for Patients With X-Linked Hypophosphatemia
Led by Kyowa Kirin Pharmaceutical Development Ltd · Updated on 2024-09-19
1343
Participants Needed
118
Research Sites
615 weeks
Total Duration
On this page
Sponsors
K
Kyowa Kirin Pharmaceutical Development Ltd
Lead Sponsor
I
IQVIA Pty Ltd
Collaborating Sponsor
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Registry for Patients With X-Linked Hypophosphatemia
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients aged 0 years or older at baseline
- Clinical, radiological, biochemical, or genetic findings that support XLH diagnosis as judged by the treating physician
- Not currently participating in an interventional clinical trial
You will not qualify if you...
- Lack of cognitive capacity to provide informed consent by the patient or their legal representative
- Current participation in an interventional clinical trial (patients may join after trial completion)
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 118 locations
1
Hopital Universitaire des Enfants Reine Fabiola
Brussels, Belgium, 1020
Actively Recruiting
2
Universitair Ziekenhuis Brussel
Brussels, Belgium, 1090
Actively Recruiting
3
Cliniques Universitaires Saint-Luc
Brussels, Belgium, 1200
Actively Recruiting
4
UZA
Edegem, Belgium, 2650
Actively Recruiting
5
Universitair Ziekenhuis Gent
Ghent, Belgium, 9000
Actively Recruiting
6
UZ Leuven
Leuven, Belgium, 3000
Actively Recruiting
7
CHU de Liège
Liège, Belgium, 4000
Actively Recruiting
8
SHATPD "Prof Ivan Mitev" EAD
Sofia, Bulgaria, 1606
Active, Not Recruiting
9
UMHAT "SofiaMed", OOD
Sofia, Bulgaria, 1797
Active, Not Recruiting
10
Children Hospital
Brno, Czechia, 625 00
Active, Not Recruiting
11
Fakultni nemocnice v Motole
Prague, Czechia, 150 06
Active, Not Recruiting
12
Aalborg University Hospital
Aalborg, Denmark, 9100
Active, Not Recruiting
13
Århus Universitetshospital - Aarhus sygehus
Aarhus, Denmark, 8200
Active, Not Recruiting
14
Århus Universitetshospital
Aarhus, Denmark, 8200
Active, Not Recruiting
15
Hospital South West Jutland
Esbjerg, Denmark, 6700
Completed
16
Rigshospitalet - Paediatric
København Ø, Denmark, 2100
Active, Not Recruiting
17
Rigshospitalet
København Ø, Denmark, 2100
Completed
18
OUH
Odense, Denmark, 5000
Active, Not Recruiting
19
Groupe Hospitalier Pellegrin - Hôpital des Enfants
Bordeaux, France, 33000
Active, Not Recruiting
20
CHU de Lyon - Hôpital Femme Mere Enfant
Bron, France, 69677
Active, Not Recruiting
21
CHRU Lille
Lille, France, 59037
Active, Not Recruiting
22
Hopital Roger Salengro - CHU Lille
Lille, France, 59037
Active, Not Recruiting
23
Hopital Arnaud de Villeneuve
Montpellier, France, 34295
Active, Not Recruiting
24
CHU de Nantes
Nantes, France, 44000
Not Yet Recruiting
25
Hôpital Cochin
Paris, France, 75679
Active, Not Recruiting
26
CHU Paris Sud - Hopital Bicêtre
Paris, France, 94270
Active, Not Recruiting
27
Hôpital Bicêtre
Paris, France, 94275
Active, Not Recruiting
28
"Hopital Pierre-Paul Riquet Centre de Rhumatologie"
Toulouse, France, 31059
Active, Not Recruiting
29
Hopital Purpan
Toulouse, France, 31059
Active, Not Recruiting
30
Klinikum Ernst-von-Bergmann Potsdam und Bad Belzig
Bad Belzig, Germany
Active, Not Recruiting
31
Uniklinikum Bochum
Bochum, Germany, 44791
Withdrawn
32
Uniklinikum Koeln
Cologne, Germany, 50937
Withdrawn
33
MVZ Dr. Eberhard & Partner
Dortmund, Germany, 44137
Withdrawn
34
Universitaetsklinikum Freiburg
Freiburg im Breisgau, Germany, 79106
Withdrawn
35
Medizinische Hochschule Hannover
Hanover, Germany, 30625
Active, Not Recruiting
36
Universitaetsklinikum
Leipzig, Germany, 04103
Active, Not Recruiting
37
Hormon and Stoffwechselzentrum
Mainz, Germany, 55122
Active, Not Recruiting
38
Semmelweis Egyetem
Budapest, Hungary, 1083
Active, Not Recruiting
39
Semmelweis Egyetem
Budapest, Hungary, 1085
Active, Not Recruiting
40
The Children's University Hospital
Dublin, Ireland, DO1 XD99
Active, Not Recruiting
41
Rambam Health Care Center
Haifa, Israel, 3109601
Active, Not Recruiting
42
Schneider Medical Center
Petah Tikva, Israel, 4920235
Active, Not Recruiting
43
Sheba Medical Center
Ramat Gan, Israel, 5265601
Active, Not Recruiting
44
Dana-Dwek Children's Hospital
Tel Aviv, Israel, 64239
Withdrawn
45
Azienda Ospedaliero Universitaria Consorziale Policlinico di Bari
Bari, Italy, 70124
Active, Not Recruiting
46
AO S. Pio G. Rumno
Benevento, Italy, 82100
Active, Not Recruiting
47
Azienda Ospedaliera Universitaria Policlinico Sant'Orsola Malpighi
Bologna, Italy, 40138
Active, Not Recruiting
48
Presidio Ospedaliero Di Summa Antonio Perrino
Brindisi, Italy, 72100
Active, Not Recruiting
49
Azienda Ospedaliera Brotzu
Cagliari, Italy, 09121
Active, Not Recruiting
50
Azienda Ospedaliera Universitaria Careggi
Florence, Italy, 50134
Active, Not Recruiting
51
Istituto Giannina Gaslini-Ospedale Pediatrico IRCCS
Genova, Italy, 16147
Active, Not Recruiting
52
ICOT-Istituto Chirurgico Ortopedico Traumatologico
Latina, Italy, 04100
Not Yet Recruiting
53
Azienda Ospedaliera Universitaria Policlinico G. Martino
Messina, Italy, 98125
Active, Not Recruiting
54
Ospedale San Raffaele - Adult
Milan, Italy, 20132
Active, Not Recruiting
55
Ospedale San Raffaele
Milan, Italy, 20132
Active, Not Recruiting
56
Azienda Ospedaliera di Padova
Padova, Italy, 35128
Active, Not Recruiting
57
Azienda Ospedaliera di Padova
Padua, Italy, 35100
Active, Not Recruiting
58
Istituto Auxologico Italiano -I.R.C.C.S.
Piancavallo, Italy, 20145
Active, Not Recruiting
59
Stabilimento Ospedaliero Santa Chiara
Pisa, Italy, 56100
Active, Not Recruiting
60
Ospedale Pediatrico Bambino Gesù
Roma, Italy, 00165
Active, Not Recruiting
61
Azienda Ospedaliera Città della Salute e della Scienza di Torino (Presidio Sant'Anna)
Torino, Italy, 10126
Not Yet Recruiting
62
Azienda Ospedaliero-Universitaria Città della Salute e della Scienza di Torino
Torino, Italy, 10126
Active, Not Recruiting
63
I.R.C.C.S. Burlo Garofolo
Trieste, Italy, 34137
Active, Not Recruiting
64
Children's Clinical University Hospital
Riga, Latvia, LV-1002
Active, Not Recruiting
65
Universitair Medisch Centrum Groningen
Groningen, Netherlands, 9713 GZ
Active, Not Recruiting
66
Oslo University Hospital
Oslo, Norway, 0424
Active, Not Recruiting
67
Oslo Universitetssykehus HF, Ulleval
Oslo, Norway, 0450
Active, Not Recruiting
68
St. Olav's University Hospital
Trondheim, Norway, 7030
Active, Not Recruiting
69
Hospital Pediatrico de Coimbra
Coimbra, Portugal, 3030
Active, Not Recruiting
70
Centro Hospitalar de Lisboa Central, E.P.E. - Hospital Dona Estefânia
Lisbon, Portugal, 1169-045
Active, Not Recruiting
71
Centro Hospitalar de Lisboa Norte, E.P.E. - Hospital de Santa Maria
Lisbon, Portugal, 1649-035
Active, Not Recruiting
72
Centro Hospitalar do Porto, E.P.E. - Hospital de Santo António
Porto, Portugal, 4099-001
Active, Not Recruiting
73
Hospital de Sao Joao
Porto, Portugal, 4200-319
Active, Not Recruiting
74
National Institute of Childrenś Health NUDCH
Bratislava, Slovakia, 83340
Active, Not Recruiting
75
University Clinical Centre Ljubljana
Ljubljana, Slovenia
Active, Not Recruiting
76
Hospital de Cruces
Barakaldo, Spain, 48903
Active, Not Recruiting
77
Hospital Universitari Vall d'Hebron
Barcelona, Spain, 08035
Active, Not Recruiting
78
Hospital Clinic de Barcelona
Barcelona, Spain, 08036
Active, Not Recruiting
79
Hospital General Universitario Santa Lucía
Cartagena, Spain, 30202
Active, Not Recruiting
80
Hospital Universitario Virgen de la Arrixaca
El Palmar, Spain, 30120
Active, Not Recruiting
81
Hospital Sant Joan de Deu
Esplugues de Llobregat, Spain, 08950
Active, Not Recruiting
82
Complejo Hospitalario Universitario Insular Materno-Infantil
Las Palmas de Gran Canaria, Spain, 35016
Active, Not Recruiting
83
Hospital Infantil Universitario Niño Jesus
Madrid, Spain, 28009
Active, Not Recruiting
84
Hospital Universitario Central de Asturias
Oviedo, Spain, 33006
Active, Not Recruiting
85
Hospital Central de Asturias
Oviedo, Spain, 33011
Active, Not Recruiting
86
Hospital Universitario Nuestra Señora de la Candelaria
Santa Cruz de Tenerife, Spain, 38010
Active, Not Recruiting
87
Queen Silvia Children's Hospital
Gothenburg, Sweden, 416 85
Active, Not Recruiting
88
Lund University
Lund, Sweden, 22185
Completed
89
Karolinska Institute
Stockholm, Sweden, 112 81
Active, Not Recruiting
90
Karolinska Institute (Pediatric)
Stockholm, Sweden, 171 77
Active, Not Recruiting
91
Inselspital Bern
Bern, Switzerland, 3010
Actively Recruiting
92
Hopitaux Universitaires de Geneve (HUG)
Geneva, Switzerland, 1205
Actively Recruiting
93
Centre Hopitalier Universitaire Vaudois
Lausanne, Switzerland, 1011
Actively Recruiting
94
Centre Hopitalier Universitaire Vaudois
Lausanne, Switzerland, 1011
Actively Recruiting
95
Kantonsspital St. Gallen
Sankt Gallen, Switzerland, 9007
Actively Recruiting
96
Klinik Hirslanden Zuerich
Zurich, Switzerland, 8032
Actively Recruiting
97
Royal Belfast Hospital for Sick Children
Belfast, United Kingdom, BT12 6BE
Active, Not Recruiting
98
Birmingham Children's Hospital
Birmingham, United Kingdom, B4 6NH
Active, Not Recruiting
99
University Hospitals Bristol and Weston
Bristol, United Kingdom, BS2 8AE
Active, Not Recruiting
100
Addenbrooke's Hospital
Cambridge, United Kingdom, CB2 2QQ
Active, Not Recruiting
101
University Hospital of Wales
Cardiff, United Kingdom, CF14 4XW
Active, Not Recruiting
102
Western General Hospital
Edinburgh, United Kingdom, EH4 2XU
Active, Not Recruiting
103
Royal Hospital for Sick Children and Young People
Edinburgh, United Kingdom, EH9 1LF
Active, Not Recruiting
104
Gartnavel General Hospital
Glasgow, United Kingdom, G12 0XH
Active, Not Recruiting
105
Queen Elizabeth University Hospital
Glasgow, United Kingdom, G12 0YN
Active, Not Recruiting
106
Raigmore Hospital
Inverness, United Kingdom, IV2 3UJ
Active, Not Recruiting
107
Leeds General Infirmary
Leeds, United Kingdom, LS1 3EX
Active, Not Recruiting
108
Alder Hey Children's Hospital
Liverpool, United Kingdom, L12 2AP
Active, Not Recruiting
109
Royal Liverpool University Hospital
Liverpool, United Kingdom, L7 8XP
Active, Not Recruiting
110
National Hospital for Neurology and Neurosurgery
London, United Kingdom, NW1 2PG
Active, Not Recruiting
111
Evelina Childrens Hospital
London, United Kingdom, SE1 7EH
Active, Not Recruiting
112
Great Ormond Street Hospital for Children
London, United Kingdom, WC1N 3JH
Active, Not Recruiting
113
Royal Manchester Children's Hospital
Manchester, United Kingdom, M13 9WL
Active, Not Recruiting
114
Oxford University Hospital NHS Trust
Oxford, United Kingdom, OX3 7LD
Active, Not Recruiting
115
Sheffield Childrens Hospital
Sheffield, United Kingdom, S10 2RX
Active, Not Recruiting
116
Sheffield Teaching Hospitals
Sheffield, United Kingdom, S5 7AU
Active, Not Recruiting
117
Southampton General Hospital
Southampton, United Kingdom, SO16 6YD
Active, Not Recruiting
118
Stanmore Royal Orthopaedic Hospital
Stanmore, United Kingdom, HA7 4LP
Active, Not Recruiting
Research Team
C
Clinical Trial Cordinator
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
0
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