Actively Recruiting
The Myelin Disorders Biorepository Project
Led by Children's Hospital of Philadelphia · Updated on 2025-10-23
12000
Participants Needed
23
Research Sites
730 weeks
Total Duration
On this page
Sponsors
C
Children's Hospital of Philadelphia
Lead Sponsor
N
National Institutes of Health (NIH)
Collaborating Sponsor
AI-Summary
What this Trial Is About
The Myelin Disorders Biorepository Project (MDBP) seeks to collect and analyze clinical data and biological samples from leukodystrophy patients worldwide to support ongoing and future research projects. The MDBP is one of the world's largest leukodystrophy biorepositories, having enrolled nearly 2,000 affected individuals since it was launched over a decade ago. Researchers working in the biorepository hope to use these materials to uncover new genetic etiologies for various leukodystrophies, develop biomarkers for use in future clinical trials, and better understand the natural history of these disorders. The knowledge gained from these efforts may help improve the diagnostic tools and treatment options available to patients in the future.
CONDITIONS
Official Title
The Myelin Disorders Biorepository Project
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Male or female of any age
- Suspected or confirmed diagnosis of leukodystrophy or other white matter brain disorder based on neuroimaging or existing diagnosis
- Documentation of informed consent by the subject, parent, or legal guardian, with assent if appropriate
- Willingness to provide clinical data, participate in assessments, and/or provide biological samples
- For healthy controls: no confirmed or suspected leukodystrophy or white matter disorder, including caregivers
- Documentation of informed consent by the subject, parent, or legal guardian, with assent if appropriate
You will not qualify if you...
- Established diagnosis at referral that is not a genetic white matter disorder, such as acquired demyelinating diseases (e.g., multiple sclerosis) or infectious causes except congenital infections like CMV
- Inability to provide consent
AI-Screening
AI-Powered Screening
Complete this quick 3-step screening to check your eligibility
Trial Site Locations
Total: 23 locations
1
Children's Hospital of Los Angeles
Los Angeles, California, United States, 90027
Actively Recruiting
2
Children's Hospital of Orange County
Orange, California, United States, 92868
Actively Recruiting
3
Stanford University (Lucile Packard Children's Hospital)
Palo Alto, California, United States, 94304
Actively Recruiting
4
University of California, Davis (UC Davis Health)
Sacramento, California, United States, 95817
Actively Recruiting
5
University of California, San Diego (Rady Children's Hospital)
San Diego, California, United States, 92123
Actively Recruiting
6
UCSF Benioff Children's Hospital
San Francisco, California, United States, 94158
Actively Recruiting
7
Children's National Medical Center
Washington D.C., District of Columbia, United States, 20010
Actively Recruiting
8
Emory University (Children's Healthcare of Atlanta)
Atlanta, Georgia, United States, 30342
Actively Recruiting
9
Ann & Robert H. Lurie Children's Hospital of Chicago
Chicago, Illinois, United States, 60611
Actively Recruiting
10
Kennedy Krieger Institute
Baltimore, Maryland, United States, 21205
Actively Recruiting
11
Massachusetts General Hospital (MGH)
Boston, Massachusetts, United States, 02114
Actively Recruiting
12
University of Minnesota
Minneapolis, Minnesota, United States, 55454
Actively Recruiting
13
Mayo Clinic
Rochester, Minnesota, United States, 55905
Actively Recruiting
14
Atrium Health Wake Forest Baptist
Winston-Salem, North Carolina, United States, 27157
Actively Recruiting
15
Akron Children's Hospital
Akron, Ohio, United States, 44308
Actively Recruiting
16
Nationwide Children's Hospital
Columbus, Ohio, United States, 43205
Actively Recruiting
17
The Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
18
University of Pennsylvania
Philadelphia, Pennsylvania, United States, 19104
Actively Recruiting
19
University of Pittsburgh Medical Center
Pittsburgh, Pennsylvania, United States, 15219
Actively Recruiting
20
Baylor College of Medicine (Texas Children's Hospital)
Houston, Texas, United States, 77030
Actively Recruiting
21
UT Health Houston
Houston, Texas, United States
Actively Recruiting
22
University of Utah (Primary Children's Hospital)
Salt Lake City, Utah, United States, 84112
Actively Recruiting
23
Seattle Children's Hospital
Seattle, Washington, United States, 98105
Actively Recruiting
Research Team
O
Omar S. Sherbini, MPH
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
0
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