Registry Governance

The LAL-D Registry is funded and administered by Alexion Pharmaceuticals, Inc. In addition, the Registry will be overseen by a Board of Advisors, comprised of healthcare providers involved in the research or care of patients with Lysosomal Acid Lipase Deficiency (LAL-D). The Board of Advisors’ activities include further defining the objectives and scientific direction of the LAL-D Registry, advising on the Registry data fields, and facilitating analysis and dissemination of Registry data.

Physicians participating in the LAL-D Registry will own their own data; however, publication of aggregate LAL-D Registry data will be subject to initial review and approval from the Board of Advisors, and will follow ICMJE publication guidelines.