The Rare Brain Tumour Consortium Registry and Biobank
S
Scott Coven
Primary Investigator
Enrolling By Invitation
18 years and younger
All
Phase
N/A
1 participants needed
2 Locations
Brief description of study
What is the purpose of this study?
The Biobank being created by this study is located at the Hospital for Sick Children in Toronto, Canada and is a research registry that collects biological samples and medical information from individuals in participating centers around the world. The purpose of this registry is to collect and store tumor samples, blood, and cerebrospinal fluid (CSF) from individuals who have been diagnosed with a rare pediatric brain tumor and their biological (blood-related) family members. The samples, and their matching medical information, will be used by researchers now and in the future to perform biological experiments (including genetic experiments that look at DNA) to learn more about these types of tumors, which may identify more effective treatment options.
THIS STUDY IS ENROLLING BY INVITATION ONLY - Consistent with most oncology trials, patients are not actively “recruited,” but are screened by their physician for appropriate clinical trial(s) at the time of their routine clinic visit. Occasionally, a patient may be a self-referral or physician referral, but are still screened for appropriate clinical trials at the time of their routine clinic visit. PI and staff may send copies of relevant consent forms to these patients to look over prior to actually consenting or enrolling them. This may take place at the patient's visit at which the consent is presented or the patient's next visit to the outpatient hematology/oncology clinic.
Interested in participating? For more information about this research study or other cancer-related clinical trials at IU Simon Comprehensive Cancer Center, please contact:
IU Clinical Trials Office
Email: iutrials@iu.edu
Phone: (317) 278-5632
Detailed description of study
What will happen during the study?
Researchers will collect health history, a blood sample, samples of brain tumor tissue, blood or CSF (collected during standard treatment procedures), or left-over tissue samples from clinical biopsies.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: Brain Tumor. Riley
-
Age: - 18 Years
-
Gender: All
Inclusion Criteria:
- Patients suspected or diagnosed with rare central nervous system tumors (ETANTR/ETMR, PNET/embryonal brain tumor with BCOR/FOXR2 alterations and not otherwise specified (NOS), ATRT-and other CNS rhabdoid tumors, central nervous system mesenchymal tumors NOS, pineal region embryonal tumors) on clinical criteria
Exclusion Criteria:
- Parent/guardian or participant does not provide informed consent
Updated on
12 Sep 2024.
Study ID: 13395, PHO-SICKKIDS-BIOBANK-REGISTRY
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