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RECRUITINGOBSERVATIONAL

Registry of X-linked Adrenoleukodystrophy

Important: This information is not medical advice. Talk to your doctor about whether a clinical trial is right for you.

About This Trial

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.

Who May Be Eligible (Plain English)

Who May Qualify: 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 willing to sign a consent form. 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. Who Should NOT Join This Trial: - 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 willing to sign a consent form; - Unable to tolerate MRI or eye related tests. Always talk to your doctor about whether this trial is right for you.

Original Eligibility Criteria

View original clinical language
Inclusion Criteria: 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. Exclusion Criteria: * 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.

Locations (1)

Beijing Tiantan Hospital
Beijing, China