Lysosomal Acid Lipase (LAL) Deficiency Registry (NCT01633489)
An Observational Disease and Clinical Outcomes Registry of Patients With Lysosomal Acid Lipase (LAL) Deficiency
🩺 Plain-English Summary (8th-Grade Level)
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.
Who can join: Review the eligibility criteria below.
Location: Clinical Trial Site — Phoenix, Arizona
📋 "Do I Qualify?" — 1-Minute Self Screener
Instant ChecklistFull eligibility criteria are available on the official NIH protocol. View the criteria ↗
📍 All Participating Trial Locations (104 Sites)
Showing the first 25 of 104 sites.
- Clinical Trial Site — Phoenix, Arizona
- Clinical Trial Site — Stanford, California
- Clinical Trial Site — Miramar, Florida
- Clinical Trial Site — Orlando, Florida
- Clinical Trial Site — Atlanta, Georgia
- Clinical Trial Site — Chicago, Illinois
- Clinical Trial Site — Boston, Massachusetts
- Clinical Trial Site — Detroit, Michigan
- Clinical Trial Site — Minneapolis, Minnesota
- Clinical Trial Site — Jackson, Mississippi
- Clinical Trial Site — Hackensack, NJ, 7601, New Jersey
- Clinical Trial Site — New York, New York
- Clinical Trial Site — The Bronx, New York
- Clinical Trial Site — Philadelphia, Pennsylvania
- Clinical Trial Site — Philadelphia, Pennsylvania
- Clinical Trial Site — Philadelphia, Pennsylvania
- Clinical Trial Site — Houston, Texas
- Clinical Trial Site — Houston, Texas
- Clinical Trial Site — Snyder, Texas
- Clinical Trial Site — Tacoma, Washington
- Clinical Trial Site — New Lambton Heights, New South Wales
- Clinical Trial Site — Ghent, East Flanders
- Clinical Trial Site — Campinas, São Paulo
- Clinical Trial Site — São Paulo,
- Clinical Trial Site — São Paulo,
📞 Contact the Study Coordinator
Phone: (855) 752-2356
Email: clinicaltrials@alexion.com
Coordinator details come directly from the registered NIH protocol. Confirm the study is still recruiting before traveling.
💰 Cost, Insurance & Patient Rights
- 100% Free Items: The investigational treatment and protocol-required procedures are supplied at zero cost by the sponsor.
- Routine Patient Care: Under federal law (ACA § 2709) and many state statutes, routine care costs are covered during participation.
- Voluntary Participation: You may withdraw at any time without affecting your standard medical care.
Explore by condition: All Lysosomal Acid Lipase Deficiency clinical trials
💡 How to Participate
- Check the checklist above to see if you may qualify.
- Contact the study coordinator using the phone/email above.
- Ask about the visit schedule, what is covered at no cost, and any travel support.
- Confirm with your own doctor before making a decision.