An Observational Disease and Clinical Outcomes Registry of Patients With Lysosomal Acid Lipase (LAL) Deficiency

Status: Recruiting
Location: See all (101) locations...
Study Type: Observational
SUMMARY

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.

Eligibility
Participation Requirements
Sex: All
Healthy Volunteers: f
View:

• Patients must have a confirmed diagnosis of LAL Deficiency. An Informed Consent and Authorization must be obtained prior to patient enrollment where required under applicable laws and regulations, or a waiver must be obtained by the Institutional Review Board/Independent Ethics Committee.

• Patients cannot be currently participating in an Alexion-sponsored clinical trial. Patients who have concluded participation in an Alexion-sponsored sebelipase alfa clinical trial are eligible to enroll in this Registry, and enrollment in the Registry will not exclude a patient from enrolling in a future clinical trial.

Locations
United States
Arizona
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Phoenix
California
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Stanford
Florida
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Miramar
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Orlando
Georgia
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Atlanta
Illinois
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Chicago
Massachusetts
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Boston
Michigan
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Detroit
Minnesota
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Minneapolis
Mississippi
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Jackson
New Jersey
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Hackensack, Nj, 7601
New York
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New York
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The Bronx
Pennsylvania
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Philadelphia
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Philadelphia
Texas
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Houston
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Houston
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Snyder
Washington
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Tacoma
Other Locations
Australia
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New Lambton Heights
Belgium
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Ghent
Brazil
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Campinas
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São Paulo
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São Paulo
Bulgaria
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Sofia
Canada
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Edmonton
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Halifax
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London
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Québec
Croatia
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Zagreb
France
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Bron
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Caen
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Clermont-ferrand
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Clermont-ferrand
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Dijon
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Grenoble
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La Rochelle
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Nancy
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Nantes
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Niort
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Paris
Germany
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Berlin
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Essen
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Mainz
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Munich
Greece
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Athens
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Ioannina
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Thessaloniki
Ireland
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Dublin
Israel
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Haifa
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Jerusalem
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Jerusalem
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Petah Tikva
Italy
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Bari
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Bergamo
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Florence
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Genoa
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Milan
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Napoli
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Padua
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Turin
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Udine
Mexico
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Aguascalientes
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Mexico City
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Zapopan
Netherlands
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Amsterdam
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Amsterdam
Portugal
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Guimarães
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Lisbon
Russian Federation
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Moscow
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Moscow
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Moscow
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Moscow
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Nizhny Novgorod
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Petersburg
Saudi Arabia
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Riyadh
Clinical Trial Site
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Riyadh
Slovenia
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Ljubljana
Spain
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A Coruña
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Albacete
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Alicante
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Barakaldo
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Barcelona
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Barcelona
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Burela De Cabo
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Las Palmas
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Logroño
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Madrid
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Madrid
Clinical Trial Site
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Málaga
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Murcia
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Oviedo
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Reus
Clinical Trial Site
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Santiago De Compostela
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Valladolid
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Zaragoza
United Kingdom
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Birmingham
Clinical Trial Site
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Cambridge
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London
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Manchester
Clinical Trial Site
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Salford
Contact Information
Primary
Alexion Pharmaceuticals, Inc. (Sponsor)
clinicaltrials@alexion.com
1-855-752-2356
Time Frame
Start Date: 2013-05-30
Estimated Completion Date: 2029-08-30
Participants
Target number of participants: 300
Treatments
LAL Deficiency patients
Patients are those with a diagnosis of LAL Deficiency (living and deceased), irrespective of treatment status or treatment choice.
Sponsors
Leads: Alexion Pharmaceuticals, Inc.

This content was sourced from clinicaltrials.gov

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