RECRUITING

Adrenoleukodystrophy National Registry Study

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

The aim of this registry to understand the natural history and disease progression in ALD and potentially develop bio-markers using the biospecimens collected using this registry.

Official Title

Adrenoleukodystrophy National Registry Study

Quick Facts

Study Start:2019-05-01
Study Completion:2030-02
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:RECRUITING

Study ID

NCT03789721

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

Ashish Gupta, MD
CONTACT
612-626-2961
gupta461@umn.edu
Paul Orchard, MD
CONTACT
612-626-2961
orcha001@umn.edu

Study Locations (Sites)

Masonic Cancer Center at University of Minnesota
Minneapolis, Minnesota, 55455
United States

Collaborators and Investigators

Sponsor: Masonic Cancer Center, University of Minnesota

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 Date2019-05-01
Study Completion Date2030-02

Study Record Updates

Study Start Date2019-05-01
Study Completion Date2030-02

Terms related to this study

Keywords Provided by Researchers

  • Registry, VLCFA, ABCD1, X-chromosome

Additional Relevant MeSH Terms

  • ALD (Adrenoleukodystrophy)
  • Adrenoleukodystrophy
  • Cerebral Adrenoleukodystrophy