RECRUITING

Lysosomal Acid Lipase (LAL) Deficiency Registry

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Conditions

Lysosomal Acid Lipase DeficiencyCholesterol Ester Storage DiseaseWolman DiseaseAcid Cholesteryl Ester Hydrolase Deficiency, Type 2Acid Lipase DeficiencyLIPA DeficiencyLAL-Deficiency

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Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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.

Official Title

An Observational Disease and Clinical Outcomes Registry of Patients With Lysosomal Acid Lipase (LAL) Deficiency

Quick Facts

Study Start:2013-05-30
Study Completion:2029-08-30
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT01633489

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:Not specified
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. Age 18 years or older
  2. Willing and able to provide informed consent
  3. Able to understand and follow study procedures
  4. Stable medical condition
  1. Pregnancy or breastfeeding
  2. Severe psychiatric disorders
  3. Active substance abuse
  4. Unstable medical conditions
  5. Inability to comply with study requirements

Contacts and Locations

Study Contact

Alexion Pharmaceuticals, Inc. (Sponsor)
CONTACT
1-855-752-2356
clinicaltrials@alexion.com

Principal Investigator

Alexion Pharmaceuticals
STUDY_DIRECTOR
Sponsor GmbH

Study Locations (Sites)

Phoenix, Arizona
United States
Los Angeles, California
United States
Stanford, California, 94305
United States
Orlando, Florida
United States
Atlanta, Georgia
United States
Chicago, Illinois, 60611
United States
Boston, Massachusetts, 02115
United States
Detroit, Michigan, 48236
United States
Minneapolis, Minnesota, 55111
United States
Hackensack, New Jersey
United States
Bronx, New York, 10467
United States
New York, New York, 11030
United States
Philadelphia, Pennsylvania
United States
Dallas, Texas
United States
Houston, Texas, 77030
United States
Fairfax, Virginia, 22030
United States
Tacoma, Washington
United States

Collaborators and Investigators

Sponsor: Alexion Pharmaceuticals, Inc.

  • Alexion Pharmaceuticals, STUDY_DIRECTOR, Sponsor GmbH

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2013-05-30
Study Completion Date2029-08-30

Study Record Updates

Study Start Date2013-05-30
Study Completion Date2029-08-30

Terms related to this study

Additional Relevant MeSH Terms

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