NCT03789721 Adrenoleukodystrophy National Registry Study
| NCT ID | NCT03789721 |
| Status | Recruiting |
| Phase | — |
| Sponsor | Masonic Cancer Center, University of Minnesota |
| Condition | ALD (Adrenoleukodystrophy) |
| Study Type | OBSERVATIONAL |
| Enrollment | 1,000 participants |
| Start Date | 2019-05-01 |
| Primary Completion | 2030-02 |
Eligibility & Interventions
Eligibility Fast-Check
Enter your details for a quick preliminary check. This does not replace medical advice.
What to Expect as a Participant
This is an observational study. You will not receive an experimental treatment; researchers will collect data based on your existing condition or standard treatment.
This trial targets 1,000 participants in total. It began in 2019-05-01 with a primary completion date of 2030-02.
⚠ This information is for research awareness only. Always consult your physician before joining any clinical trial. Participation is voluntary and you may withdraw at any time.
Brief Summary
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
Inclusion Criteria * Age 0 - 100 * ALD patients or family member meeting any of the following criteria: * 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 Exclusion Criteria * 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 * Patient determined by the PI or designee to be unlikely to complete required study components (due to language barriers, compliance issues, etc.)
Contact & Investigator
Frequently Asked Questions
Who can join the NCT03789721 clinical trial?
This trial is open to participants of all sexes, studying ALD (Adrenoleukodystrophy). Full inclusion and exclusion criteria are listed in the Eligibility Criteria section. Always confirm your eligibility with the research team before applying.
Is NCT03789721 currently recruiting?
Yes, NCT03789721 is actively recruiting participants. Contact the research team at gupta461@umn.edu for enrollment information.
Where is the NCT03789721 trial being conducted?
This trial is being conducted at Minneapolis, United States.
Who is sponsoring the NCT03789721 clinical trial?
NCT03789721 is sponsored by Masonic Cancer Center, University of Minnesota. The trial plans to enroll 1,000 participants.