Adrenoleukodystrophy National Registry Study
Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
AgeNot listed
SponsorMasonic Cancer Center, University of Minnesota
About this trial
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.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
Age 0 - 100
Any patient diagnosed with ALD (confirmed by positive VLCFA testing and/or genetic mutation).
Known or presumed mutation with ALD based on pedigree or confirmed mutation in ABCD1 gene
Participants living in the United States and territories
Disqualifiers
Patients diagnosed with ALD who lack the capacity to consent/assent AND do not have a designated legally authorized representative or guardian.
Patients who have undergone BMT or other cellular therapy .
Patients not fluent in English who are unable to consent in-person at the BMT Journey Clinic.
Patients who are illiterate
Trial population
participants with Adrenoleukodystrophy (ALD) and known/presumed mutation for ALD.
Trial design
Design model
Cohort
Time perspective
Prospective
Treatments tested in this trial
Medical Record Abstraction
Other interventionCollect clinical and epidemiological data through medical record abstraction and self-reported questionnaire survey semi-annually.
Biospecimen Sample Collection
Other interventionCollect research samples, when feasible for those diagnosed with ALD.
Treatment groups
1,000 Participants
are divided into 1 treatment groupGroup A: Adrenoleukodystrophy2 interventions
Trial outcomes
Primary outcomes
1
Collect Clinical and Epidemiological Data
Collect clinical and epidemiological data through medical record abstraction and self-reported questionnaire survey semi-annually.
Time frame
10 YearsSponsors and contacts
Click on the lead sponsor to view all of their trials.
Source ClinicalTrials.gov