Adrenoleukodystrophy National Registry Study

Part of paid clinical trials in Minneapolis, Minnesota.

Sponsor
Masonic Cancer Center, University of Minnesota
Study ID
NCT03789721
Status
Recruiting
Apply to this trial

Conditions

Eligibility Criteria

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

Interventions

  • Medical Record Abstraction — OTHER
    Collect clinical and epidemiological data through medical record abstraction and self-reported questionnaire survey semi-annually.
  • Biospecimen Sample Collection — OTHER
    Collect research samples, when feasible for those diagnosed with ALD.

Study Details

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.

Key Dates

Start date
May 1, 2019
Status verified
May 2026
Primary completion
Feb 28, 2030
Completion
Feb 28, 2030

Study Design

Enrollment
1,000 participants (estimated)

Arms

  • Arm: Adrenoleukodystrophy
    All patients living in the United States diagnosed with adrenoleukodystrophy, either by newborn screen, based on family history or otherwise, are eligible to participate in this study.

Primary Outcome Measure

Collect Clinical and Epidemiological Data [ Time Frame: 10 Years ]

Central Contacts

Locations (1)

FacilityCityStateZIPSite coordinators
Masonic Cancer Center at University of MinnesotaMinneapolisMinnesota55455
Phil Lacher
[email protected]
612-626-2977

Find similar trials in Minneapolis, MN

By research site
Masonic Cancer Center at University of Minnesota· Minneapolis, MN

Related Studies