Clinical Trials in Italy / NCT01633489
Recruiting
Observational
Lysosomal Acid Lipase (LAL) Deficiency Registry
NCT01633489 · tracked via the Priya Life Science Italy tracker
Condition(s) studied
Lysosomal Acid Lipase DeficiencyCholesterol Ester Storage DiseaseWolman DiseaseAcid Cholesteryl Ester Hydrolase Deficiency, Type 2Acid Lipase DeficiencyLIPA DeficiencyLAL-Deficiency
Study summary
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.
Eligibility
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.
Primary outcome measure(s)
- Understanding of the variability, progression, identification and natural history of LAL Deficiency. — Ongoing
Trial sites (104)
| Facility | City | Region | Status |
|---|---|---|---|
| Clinical Trial Site | Phoenix | Arizona | Recruiting |
| Clinical Trial Site | Stanford | California | Recruiting |
| Clinical Trial Site | Miramar | Florida | Recruiting |
| Clinical Trial Site | Orlando | Florida | Recruiting |
| Clinical Trial Site | Atlanta | Georgia | Recruiting |
| Clinical Trial Site | Chicago | Illinois | Recruiting |
| Clinical Trial Site | Boston | Massachusetts | Recruiting |
| Clinical Trial Site | Detroit | Michigan | Recruiting |
| Clinical Trial Site | Minneapolis | Minnesota | Recruiting |
| Clinical Trial Site | Jackson | Mississippi | Recruiting |
| Clinical Trial Site | Hackensack, NJ, 7601 | New Jersey | Recruiting |
| Clinical Trial Site | New York | New York | Recruiting |
| Clinical Trial Site | The Bronx | New York | Recruiting |
| Clinical Trial Site | Philadelphia | Pennsylvania | Recruiting |
| Clinical Trial Site | Philadelphia | Pennsylvania | Recruiting |
| Clinical Trial Site | Philadelphia | Pennsylvania | Recruiting |
| Clinical Trial Site | Houston | Texas | Recruiting |
| Clinical Trial Site | Houston | Texas | Recruiting |
| Clinical Trial Site | Snyder | Texas | Recruiting |
| Clinical Trial Site | Tacoma | Washington | Recruiting |
| Clinical Trial Site | New Lambton Heights | New South Wales | Recruiting |
| Clinical Trial Site | Ghent | East Flanders | Recruiting |
| Clinical Trial Site | Campinas | São Paulo | Recruiting |
| Clinical Trial Site | São Paulo | Brazil | Recruiting |
| Clinical Trial Site | São Paulo | Brazil | Recruiting |
| Clinical Trial Site | Sofia | Sofia-Grad | Recruiting |
| Clinical Trial Site | Edmonton | Alberta | Recruiting |
| Clinical Trial Site | Halifax | Nova Scotia | Recruiting |
| Clinical Trial Site | London | Ontario | Recruiting |
| Clinical Trial Site | Québec | Canada | Recruiting |
| Clinical Trial Site | Zagreb | Croatia | Recruiting |
| Clinical Trial Site | Prague | Central Bohemia | Recruiting |
| Clinical Trial Site | Olomouc | Czechia | Recruiting |
| Clinical Trial Site | Bron | Auvergne-Rhône-Alpes | Recruiting |
| Clinical Trial Site | Clermont-Ferrand | Auvergne-Rhône-Alpes | Recruiting |
| Clinical Trial Site | Clermont-Ferrand | Auvergne-Rhône-Alpes | Recruiting |
| Clinical Trial Site | Grenoble | Auvergne-Rhône-Alpes | Recruiting |
| Clinical Trial Site | La Rochelle | New Aquitaine | Recruiting |
| Clinical Trial Site | Niort | New Aquitaine | Recruiting |
| Clinical Trial Site | Caen | Normandy | Recruiting |
+ 64 more sites — see the full list on the official registry below.
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Official registry record
This page summarises publicly available registry data for informational purposes — not medical advice. Eligibility is determined by each study team; patients should discuss participation with their clinician.
View NCT01633489 on ClinicalTrials.gov ↗ ← All trials in Italy