Actively Recruiting
Registry of X-linked Adrenoleukodystrophy
Led by Beijing Tiantan Hospital · Updated on 2023-07-11
200
Participants Needed
1
Research Sites
280 weeks
Total Duration
On this page
AI-Summary
What this Trial Is About
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.
CONDITIONS
Official Title
Registry of X-linked Adrenoleukodystrophy
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Diagnosed with X-linked adrenoleukodystrophy supported by genetic and very long chain fatty acid (VLCFA) test results
- Age between 6 and 70 years old
- Able to communicate normally and complete tests as instructed
- Signed informed consent
- Healthy carriers matching age, sex, and education of X-ALD group without psychiatric history
- Carriers eligible by genetic tests, preferably patient's mother or close relatives
- Carriers aged 6 to 70 years old and able to complete tests as instructed
You will not qualify if you...
- Having other hereditary diseases
- Having other severe central nervous system diseases
- History of brain or eye surgery
- Having psychiatric or psychological diseases such as anxiety and depression
- Presence of metal foreign bodies or prostheses like pacemakers or insulin pumps, claustrophobia, or other MRI contraindications
- History of gastrointestinal tract surgery
- Not providing informed consent
- Unable to tolerate MRI or eye-related tests
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 1 location
1
Beijing Tiantan Hospital
Beijing, China, 100050
Actively Recruiting
Research Team
Y
Yilong Wang, MD, PhD
CONTACT
How is the study designed?
Study Type
OBSERVATIONAL
Masking
N/A
Allocation
N/A
Model
N/A
Primary Purpose
N/A
Number of Arms
2
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