Lysosomal Acid Lipase (LAL) Deficiency Registry
Lysosomal Acid Lipase Deficiency | Wolman Disease | Acid Lipase Deficiency | Cholesterol Ester Storage...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.
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Participation Requirements
-
Sex:
ALL -
Eligible Ages:
0 and up
Participation Criteria
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.
Study Location
London, Ontario
Canada
Contact Study Team
- Study Sponsored By
- Alexion Pharmaceuticals, Inc.
- Participants Required
- More Information
- Study ID:
NCT01633489