PatientsWhat is a Registry? About Lysosomal Acid Lipase Deficiency (LAL-D) How Does the Registry Work? Why Participate? How Do I Participate
Registry SponsorPatient Organizations
The LAL-D Registry was created in 2013 by Synageva BioPharma Corp. This company was purchased by Alexion Pharmaceuticals Inc. (Alexion) in 2015. Alexion is the sponsor of the LAL-D Registry, the collection and management of data, and the analyses, presentation and publication of the LAL-D Registry data. In addition, the LAL-D Registry will be overseen by a Scientific Board of Advisors, comprised of physicians involved in the research or care of patients with LAL-D. The Scientific Board of Advisors will collaborate with the sponsor to define the scientific direction of the LAL Deficiency Registry, and support analysis and publication of information about the disease and its treatment.
For more information, please visit: https://clinicaltrials.gov/ct2/show/NCT01633489