Lysosomal Acid Lipase (LAL) Deficiency Registry

Part of paid clinical trials in Phoenix, Arizona.

Sponsor
Alexion Pharmaceuticals, Inc.
Study ID
NCT01633489
Status
Recruiting
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Conditions

  • Acid Cholesteryl Ester Hydrolase Deficiency, Type 2
  • Acid Lipase Deficiency
  • Cholesterol Ester Storage Disease
  • LAL-Deficiency
  • LIPA Deficiency
  • Lysosomal Acid Lipase Deficiency
  • Wolman Disease

Eligibility Criteria

Sex
ALL
Age
N/A - N/A
Healthy Volunteers
Not accepted

Study Details

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.

Key Dates

Start date
May 30, 2013
Status verified
Mar 2026
Primary completion
Aug 30, 2029
Completion
Aug 30, 2029

Study Design

Enrollment
300 participants (estimated)

Arms

  • Arm: LAL Deficiency patients
    Patients are those with a diagnosis of LAL Deficiency (living and deceased), irrespective of treatment status or treatment choice.

Primary Outcome Measure

Understanding of the variability, progression, identification and natural history of LAL Deficiency. [ Time Frame: Ongoing ]

Central Contacts

Locations (20)

FacilityCityStateZIPSite coordinators
Clinical Trial SitePhoenixArizona85016-
Clinical Trial SiteStanfordCalifornia94305
Clinical Trial SiteMiramarFlorida33025-
Clinical Trial SiteOrlandoFlorida32806-
Clinical Trial SiteAtlantaGeorgia30322-
Clinical Trial SiteChicagoIllinois60611
Clinical Trial SiteBostonMassachusetts02115
Clinical Trial SiteDetroitMichigan48236
Clinical Trial SiteMinneapolisMinnesota55404-
Clinical Trial SiteJacksonMississippi39216-
Clinical Trial SiteHackensack, NJ, 7601New Jersey07601-
Clinical Trial SiteNew YorkNew York10016
Clinical Trial SiteThe BronxNew York10467
Clinical Trial SitePhiladelphiaPennsylvania19104-6061-
Clinical Trial SitePhiladelphiaPennsylvania19104-
Clinical Trial SitePhiladelphiaPennsylvania19107-
Clinical Trial SiteHoustonTexas77030
Clinical Trial SiteHoustonTexas77030-
Clinical Trial SiteSnyderTexas79549-
Clinical Trial SiteTacomaWashington98405-

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