Adrenoleukodystrophy National Registry Study
|The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details.|
|ClinicalTrials.gov Identifier: NCT03789721|
Recruitment Status : Recruiting
First Posted : December 31, 2018
Last Update Posted : July 1, 2020
|Condition or disease||Intervention/treatment|
|ALD (Adrenoleukodystrophy) Adrenoleukodystrophy Cerebral Adrenoleukodystrophy||Other: Medical Record Abstraction Other: Biospecimen Sample Collection|
|Study Type :||Observational [Patient Registry]|
|Estimated Enrollment :||1000 participants|
|Target Follow-Up Duration:||99 Years|
|Official Title:||Adrenoleukodystrophy National Registry Study|
|Actual Study Start Date :||May 1, 2019|
|Estimated Primary Completion Date :||February 2030|
|Estimated Study Completion Date :||February 2030|
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.
Other: Medical Record Abstraction
Collect clinical and epidemiological data through medical record abstraction and self-reported questionnaire survey semi-annually.
Other: Biospecimen Sample Collection
Collect research samples, when feasible for those diagnosed with ALD.
- Collect Clinical and Epidemiological Data [ Time Frame: 10 Years ]Collect clinical and epidemiological data through medical record abstraction and self-reported questionnaire survey semi-annually.
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03789721
|Contact: Ashish Gupta, MDfirstname.lastname@example.org|
|Contact: Paul Orchard, MDemail@example.com|
|United States, Minnesota|
|Masonic Cancer Center at University of Minnesota||Recruiting|
|Minneapolis, Minnesota, United States, 55455|
|Contact: Phil Lacher 612-626-2977 firstname.lastname@example.org|