Registry of X-linked Adrenoleukodystrophy

Recruiting now

Conditions studied: X-linked Adrenoleukodystrophy

In brief

This study is a observational study conducted through recruiting X-linked adrenoleukodystrophy (X-ALD) patients, to build a comprehensive evaluation and long-term follow-up platform for X-ALD patients, and to provide a theoretical basis for the treatment and management of X-ALD patients.

Key facts

Study ID

NCT05939232

Run by

Beijing Tiantan Hospital

People needed

200

Starts

2023-07-20

Expected to finish

2028-12-01

Last updated by the study team

2023-07-11

Who can join

Age: 6 and older, up to 70. Sex: any. Healthy volunteers: accepted.

You may qualify if…

• X-ALD group：
• Meet the diagnostic criteria of X-ALD and supported by the results of genetic and very long chain fatty acid (VLCFA) test;
• Age: 6 - 70 years old;
• Able to communicate normally, and complete the test of scale as instructed (confirmed by the field test of scale);
• Sign the informed consent.
• Carrier-control group:
• Healthy people who have no significant difference in age, sex and education comparing with the X-ALD group, volunteer to participate in this study, could complete the test of scale as instructed, and meet the following criteria:
• Eligible for asymptomatic carriers in genetic tests (preference of patient's mother and close relatives);
• Age: 6 - 70 years old, able to complete the test of scale as instructed (confirmed by the field test of scale);
• No history of psychiatric diseases.

You may not qualify if…

• Other hereditary diseases;
• Other severe central nervous diseases;
• History of surgery of brain or eye;
• Psychiatric and psychological diseases, such as anxiety and depression;
• Metal foreign body or prosthesis in the human body (such as pacemaker and insulin pump), claustrophobia, and other MRI contraindications;
• History of surgery associated with gastrointestinal tract;
• No informed consent;
• Unable to tolerate MRI or eye related tests.

Where it is running

• Beijing Tiantan Hospital — Beijing, China (enrolling)

Full record on ClinicalTrials.gov

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