Registry of X-linked Adrenoleukodystrophy
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.
| Condition(s) | X-linked Adrenoleukodystrophy |
|---|---|
| Status | Recruiting |
| Study type | Observational |
| Summary | 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 can participate | 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 |
| Ages | 6 Years to 70 Years |
| Sex | All |
| Accepts healthy volunteers | Yes |
| Lead sponsor | Beijing Tiantan Hospital |
| Locations | Beijing, China |
| Start date | 2023-07-20 |
| NCT ID | NCT05939232 |
| Official listing | https://clinicaltrials.gov/study/NCT05939232 |