Actively Recruiting

All Genders
NCT03193476

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

All Genders

Eligibility Criteria

Eligible

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
Not Eligible

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

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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

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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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