Actively Recruiting
Relapsed and Progressive Sonic Hedgehog Medulloblastoma With U1 Mutation Registry Study
Led by Mohammad H. Abu Arja · Updated on 2026-04-13
300
Participants Needed
2
Research Sites
534 weeks
Total Duration
On this page
Sponsors
M
Mohammad H. Abu Arja
Lead Sponsor
B
Baylor College of Medicine
Collaborating Sponsor
AI-Summary
What this Trial Is About
The purpose of this study is to create a biobank for patients diagnosed with Sonic Hedgehog Medulloblastoma at Baylor College of Medicine/Texas Children's Cancer Center. A biobank is a facility that stores and manages biological samples (such as blood, tissue, or DNA) from individuals, along with detailed health information, for use in medical research to study diseases and develop new treatments. The investigators are requesting participants' permission to add their information and samples to this biobank. Being in this research study is voluntary; it is the participant's choice. If the participant joins this study, they can still stop at any time. If the participant decides to participate, the investigators will review the participant's clinical medical records, demographics, treatment history, family history, and imaging. The investigators will also collect biological samples from the participant and the biological parents' buccal swabs (optional). The participation in this biobank will last about 5 years from the decision to participate. Why am I being asked to participate? The participant or their child is invited to participate in this study if the participant or their tumor may have a U1 mutation. U1 mutation is associated with an error in the gene that splices the tumor DNA, leading to random splicing that may increase the tumor mutation burden and generate novel tumor neoantigens (targets). Studying the U1 mutation will enable the investigator to design more effective therapies and guide future treatments for patients with relapsed or refractory sonic hedgehog medulloblastoma, thereby improving their outcomes and quality of life. Moreover, the investigators aim to determine whether germline mutations inherited from parents may increase the risk of medulloblastoma in their offspring. The participant will receive no direct benefit from their participation in this study. However, participation in this study may help the investigators better understand SHH Medulloblastomas and benefit other patients in the future.
CONDITIONS
Official Title
Relapsed and Progressive Sonic Hedgehog Medulloblastoma With U1 Mutation Registry Study
Who Can Participate
Eligibility Criteria
You may qualify if you...
- Patients aged 3 to 50 years at initial diagnosis
- Diagnosis of SHH medulloblastoma by histologic or molecular criteria
- Disease status is recurrent, refractory, or progressive after therapy including radiotherapy and chemotherapy
- Available tumor tissue samples for U1 mutation testing
- Biological parents of enrolled subjects are eligible to participate
You will not qualify if you...
- Subjects not meeting all of the inclusion criteria will be excluded
AI-Screening
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Trial Site Locations
Total: 2 locations
1
Baylor College of Medicine
Houston, Texas, United States, 77004
Actively Recruiting
2
MD Anderson Cancer Center
Houston, Texas, United States, 77030
Actively Recruiting
Research Team
M
Mohammad H Abu-Arja, MD, MSc
CONTACT
T
Ta Tara Rideau
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
3
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