Status:

TERMINATED

Clinical Study In Infants With Rapidly Progressive Lysosomal Acid Lipase Deficiency

Lead Sponsor:

Alexion Pharmaceuticals, Inc.

Conditions:

Lysosomal Acid Lipase Deficiency

Eligibility:

All Genders

Up to 8 years

Phase:

PHASE2

Brief Summary

This was an open-label, repeat-dose, study of sebelipase alfa in infants with rapidly progressive lysosomal acid lipase deficiency (LAL-D). Eligible participants received once-weekly infusions of sebe...

Detailed Description

Lysosomal acid lipase deficiency is a rare autosomal recessive lipid storage disorder that is caused by a marked decrease or complete absence of the LAL enzyme, leading to the accumulation of lipids, ...

Eligibility Criteria

Inclusion

  • Participant's parent or legal guardian (if applicable) consent to participation in the study
  • Confirmation of documented decreased LAL activity relative to the normal range of the lab performing the assay or confirmation of LAL-D diagnosis as determined by a Sponsor-approved central laboratory
  • Substantial clinical concerns, in the opinion of Investigator and Sponsor, of rapid disease progression requiring urgent medical intervention including, but not restricted to the following:
  • Marked abdominal distension and hepatomegaly
  • Failure to thrive
  • Disturbance of coagulation
  • Severe anemia
  • Sibling with rapidly progressive course of LAL-D

Exclusion

  • Clinically important concurrent disease
  • Participant was \> 8 months of age at the time of first dosing
  • Participant received an investigational medicinal product other than sebelipase alfa within 14 days prior to the first dose of sebelipase alfa in this study
  • Myeloablative preparation, or other systemic pre-transplant conditioning, for hematopoietic stem cell or liver transplantation
  • Previous hematopoietic stem cell or liver transplant
  • Known hypersensitivity to eggs

Key Trial Info

Start Date :

June 6 2014

Trial Type :

INTERVENTIONAL

Allocation :

ACTUAL

End Date :

October 30 2018

Estimated Enrollment :

10 Patients enrolled

Trial Details

Trial ID

NCT02193867

Start Date

June 6 2014

End Date

October 30 2018

Last Update

November 18 2019

Active Locations (5)

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Page 1 of 2 (5 locations)

1

Phoenix, Arizona, United States, 85016

2

Kuopio, Finland

3

Naples, Italy

4

Birmingham, United Kingdom

Clinical Study In Infants With Rapidly Progressive Lysosomal Acid Lipase Deficiency | DecenTrialz