RECRUITINGOBSERVATIONAL
Registry of X-linked Adrenoleukodystrophy
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