Actively Recruiting

All Genders
NCT01633489

Lysosomal Acid Lipase (LAL) Deficiency Registry

Led by Alexion Pharmaceuticals, Inc. · Updated on 2026-03-06

300

Participants Needed

104

Research Sites

848 weeks

Total Duration

On this page

AI-Summary

What this Trial Is About

This is an observational, multi-center, international disease registry designed to collect longitudinal data and create a knowledge base that will be utilized to improve the care and treatment of patients with LAL Deficiency. Participation in the Registry by both physicians and patients is voluntary.

CONDITIONS

Official Title

Lysosomal Acid Lipase (LAL) Deficiency Registry

Who Can Participate

All Genders

Eligibility Criteria

Eligible

You may qualify if you...

  • Patients must have a confirmed diagnosis of LAL Deficiency.
  • Informed Consent and Authorization must be obtained prior to enrollment where required by law or a waiver obtained by the ethics committee.
  • Patients who have previously completed participation in an Alexion-sponsored sebelipase alfa clinical trial are eligible to enroll.
Not Eligible

You will not qualify if you...

  • Patients currently participating in an Alexion-sponsored clinical trial.

AI-Screening

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Trial Site Locations

Total: 104 locations

1

Clinical Trial Site

Phoenix, Arizona, United States, 85016

Actively Recruiting

2

Clinical Trial Site

Stanford, California, United States, 94305

Actively Recruiting

3

Clinical Trial Site

Miramar, Florida, United States, 33025

Actively Recruiting

4

Clinical Trial Site

Orlando, Florida, United States, 32806

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5

Clinical Trial Site

Atlanta, Georgia, United States, 30322

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6

Clinical Trial Site

Chicago, Illinois, United States, 60611

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7

Clinical Trial Site

Boston, Massachusetts, United States, 02115

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8

Clinical Trial Site

Detroit, Michigan, United States, 48236

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9

Clinical Trial Site

Minneapolis, Minnesota, United States, 55404

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10

Clinical Trial Site

Jackson, Mississippi, United States, 39216

Actively Recruiting

11

Clinical Trial Site

Hackensack, NJ, 7601, New Jersey, United States, 07601

Actively Recruiting

12

Clinical Trial Site

New York, New York, United States, 10016

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13

Clinical Trial Site

The Bronx, New York, United States, 10467

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14

Clinical Trial Site

Philadelphia, Pennsylvania, United States, 19104-6061

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15

Clinical Trial Site

Philadelphia, Pennsylvania, United States, 19104

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16

Clinical Trial Site

Philadelphia, Pennsylvania, United States, 19107

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17

Clinical Trial Site

Houston, Texas, United States, 77030

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18

Clinical Trial Site

Houston, Texas, United States, 77030

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19

Clinical Trial Site

Snyder, Texas, United States, 79549

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20

Clinical Trial Site

Tacoma, Washington, United States, 98405

Actively Recruiting

21

Clinical Trial Site

New Lambton Heights, New South Wales, Australia, 2305

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22

Clinical Trial Site

Ghent, East Flanders, Belgium, 9000

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23

Clinical Trial Site

Campinas, São Paulo, Brazil, 13083-878

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24

Clinical Trial Site

São Paulo, Brazil, 04020-041

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25

Clinical Trial Site

São Paulo, Brazil, 04543-011

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26

Clinical Trial Site

Sofia, Sofia-Grad, Bulgaria, 1612

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27

Clinical Trial Site

Edmonton, Alberta, Canada, T6G 2H7

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28

Clinical Trial Site

Halifax, Nova Scotia, Canada, B3H 1V8

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29

Clinical Trial Site

London, Ontario, Canada, NGA 5W9

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30

Clinical Trial Site

Québec, Canada, G1R 2J6

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31

Clinical Trial Site

Zagreb, Croatia, 10000

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32

Clinical Trial Site

Prague, Central Bohemia, Czechia, 128 00

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33

Clinical Trial Site

Olomouc, Czechia, 779 00

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34

Clinical Trial Site

Bron, Auvergne-Rhône-Alpes, France, 69500

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35

Clinical Trial Site

Clermont-Ferrand, Auvergne-Rhône-Alpes, France, 63003

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36

Clinical Trial Site

Clermont-Ferrand, Auvergne-Rhône-Alpes, France, 63100

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37

Clinical Trial Site

Grenoble, Auvergne-Rhône-Alpes, France, 38043

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38

Clinical Trial Site

La Rochelle, New Aquitaine, France, 17000

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39

Clinical Trial Site

Niort, New Aquitaine, France, 79021

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40

Clinical Trial Site

Caen, Normandy, France, 14033

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41

Clinical Trial Site

Nancy, Vandœuvre-lès-Nancy, France, 54500

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42

Clinical Trial Site

Dijon, France, 21000

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43

Clinical Trial Site

Nantes, France, 44093

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44

Clinical Trial Site

Paris, Île-de-France Region, France, 75743

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45

Clinical Trial Site

Munich, Bavaria, Germany, 81377

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46

Clinical Trial Site

Essen, North Rhine-Westphalia, Germany, 45122

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47

Clinical Trial Site

Mainz, Rhineland-Palatinate, Germany, 55131

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48

Clinical Trial Site

Berlin, Germany, 13353

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49

Clinical Trial Site

Athens, Attica, Greece, 115 27

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50

Clinical Trial Site

Ioannina, Epirus, Greece, 455 00

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51

Clinical Trial Site

Thessaloniki, Macedonia, Greece, 564 03

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52

Clinical Trial Site

Dublin, Leinster, Ireland, D01 XD99

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53

Clinical Trial Site

Petah Tikva, Central District, Israel, 49202

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54

Clinical Trial Site

Haifa, Israel, 3436212

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55

Clinical Trial Site

Jerusalem, Israel, 9103102

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56

Clinical Trial Site

Jerusalem, Israel, 91120

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57

Clinical Trial Site

Bari, Apulia, Italy, 70126

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58

Clinical Trial Site

Naples, Campania, Italy, 80131

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59

Clinical Trial Site

Udine, Friuli Venezia Giulia, Italy, 33100

Actively Recruiting

60

Clinical Trial Site

Genoa, Liguria, Italy, 16147

Actively Recruiting

61

Clinical Trial Site

Bergamo, Lombardy, Italy, 24127

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62

Clinical Trial Site

Milan, Lombardy, Italy, 20122

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63

Clinical Trial Site

Turin, Piedmont, Italy, 10126

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64

Clinical Trial Site

Florence, Tuscany, Italy, 50139

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65

Clinical Trial Site

Padova, Veneto, Italy, 35128

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66

Clinical Trial Site

Zapopan, Jalisco, Mexico, 45116

Actively Recruiting

67

Clinical Trial Site

Aguascalientes, Mexico, 20230

Actively Recruiting

68

Clinical Trial Site

Mexico City, Mexico, 06720

Actively Recruiting

69

Clinical Trial Site

Amsterdam, North Holland, Netherlands, 1105

Actively Recruiting

70

Clinical Trial Site

Amsterdam, North Holland, Netherlands, 1105

Actively Recruiting

71

Clinical Trial Site

Guimarães, Braga District, Portugal, 4835

Actively Recruiting

72

Clinical Trial Site

Lisbon, Portugal, 1649

Actively Recruiting

73

Clinical Trial Site

Petersburg, Leningradskaya Oblast', Russia, 194100

Actively Recruiting

74

Clinical Trial Site

Moscow, Moscow Oblast, Russia, 115446

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75

Clinical Trial Site

Moscow, Moscow Oblast, Russia, 119049

Actively Recruiting

76

Clinical Trial Site

Moscow, Moscow Oblast, Russia, 119192

Actively Recruiting

77

Clinical Trial Site

Moscow, Moscow Oblast, Russia, 119296

Actively Recruiting

78

Clinical Trial Site

Nizhny Novgorod, Nizhny Novgorod Oblast, Russia, 603950

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79

Clinical Trial Site

Riyadh, Saudi Arabia, 11211

Actively Recruiting

80

Clinical Trial Site

Riyadh, Saudi Arabia, 11426

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81

Clinical Trial Site

Ljubljana, Slovenia, 1111

Actively Recruiting

82

Clinical Trial Site

Santiago de Compostela, A Coruña, Spain, 15706

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83

Clinical Trial Site

Barakaldo, Biscay, Spain, 48903

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84

Clinical Trial Site

Logroño, La Rioja, Spain, 26006

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85

Clinical Trial Site

Burela de Cabo, Lugo, Spain, 27880

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86

Clinical Trial Site

Málaga, Málaga, Spain, 29010

Actively Recruiting

87

Clinical Trial Site

Oviedo, Principality of Asturias, Spain, 33011

Actively Recruiting

88

Clinical Trial Site

Reus, Tarragona, Spain, 43204

Actively Recruiting

89

Clinical Trial Site

A Coruña, Spain, 15006

Actively Recruiting

90

Clinical Trial Site

Albacete, Spain, 02006

Actively Recruiting

91

Clinical Trial Site

Alicante, Spain, 03203

Actively Recruiting

92

Clinical Trial Site

Barcelona, Spain, 08036

Actively Recruiting

93

Clinical Trial Site

Barcelona, Spain, 08305

Actively Recruiting

94

Clinical Trial Site

Las Palmas, Spain, 35019

Actively Recruiting

95

Clinical Trial Site

Madrid, Spain, 28046

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96

Clinical Trial Site

Madrid, Spain, 28914

Actively Recruiting

97

Clinical Trial Site

Murcia, Spain, 30120

Actively Recruiting

98

Clinical Trial Site

Valladolid, Spain, 47012

Actively Recruiting

99

Clinical Trial Site

Zaragoza, Spain, 50009

Actively Recruiting

100

Clinical Trial Site

Cambridge, Cambridgeshire, United Kingdom, CB2 0QQ

Actively Recruiting

101

Clinical Trial Site

London, Greater London, United Kingdom, WC1N 3BG

Actively Recruiting

102

Clinical Trial Site

Manchester, Greater Manchester, United Kingdom, M13 9WL

Actively Recruiting

103

Clinical Trial Site

Salford, Greater Manchester, United Kingdom, M6 8HD

Actively Recruiting

104

Clinical Trial Site

Birmingham, West Midlands, United Kingdom, B4 6NH

Actively Recruiting

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Research Team

A

Alexion Pharmaceuticals, Inc. (Sponsor)

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

1

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