A Protocol for Children and Young Adults Diagnosed with a Central Nervous System (CNS) Tumor to Assess Cognitive, Quality of Life (QOL), and Comprehensive Effects of Therapies
S
Scott Coven
Primary Investigator
Enrolling By Invitation
39 years or below
All
Phase
N/A
6 participants needed
2 Locations
Brief description of study
What is the purpose of this study?
To longitudinally assess cognitive outcomes using an a neurocognitive screening battery in children and young adults diagnosed with a CNS tumor. To longitudinally assess the impact of specific therapies on the QOL in children and young adults diagnosed with a CNS tumor.
To longitudinally assess brain, spine, and vascular imaging to correlate these with treatment, cognitive and QOL outcomes.
To longitudinally assess brain, spine, and vascular imaging to correlate these with treatment, cognitive and QOL outcomes.
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</div>
Detailed description of study
What will happen during the study?
This is a prospective, comprehensive observational study for children and young adults diagnosed with CNS tumors. Patients treated on a PNOC interventional trial will co-enroll into this longitudinal follow up protocol.
Data that will be collected as part of this longitudinal follow up study will largely be done as part of standard- of-care (SOC) measures, such as imaging, genomic data, and endocrine function. Additional data will be collected on a research basis, unless these measures are also being collected as part of SOC, including longitudinal cognitive and QOL outcome measures.
Eligibility of study
You may be eligible for this study if you meet the following criteria:
- Conditions: CNS tumor, spinal cord tumor, Cancer, Riley
-
Age: 39 years or below
-
Gender: All
Inclusion Criteria
1. Diagnosis: children and young adults with CNS tumor including brain and spinal
cord tumors
2. Patients with neurofibromatosis or other hereditary tumor predisposition
syndroms are eligible for this trial if they have a CNS (brain or spinal cord) tumor
3. Age: 0-39 years of age at the time of initial CNS tumor diagnosis
4. Patients who are enrolled on a PNOC therapeutic trial will co-enroll in this study.
These patients may be any age at the time of enrollment, but must have been 39
at the time of diagnosis.
5. Patients who are not enrolled in a PNOC therapeutic clinical trial are eligible but
not required to participate in this study. These patients must be 39 at the time of
enrollment.
6. Patients without tissue available will still be eligible for the trial.
cord tumors
2. Patients with neurofibromatosis or other hereditary tumor predisposition
syndroms are eligible for this trial if they have a CNS (brain or spinal cord) tumor
3. Age: 0-39 years of age at the time of initial CNS tumor diagnosis
4. Patients who are enrolled on a PNOC therapeutic trial will co-enroll in this study.
These patients may be any age at the time of enrollment, but must have been 39
at the time of diagnosis.
5. Patients who are not enrolled in a PNOC therapeutic clinical trial are eligible but
not required to participate in this study. These patients must be 39 at the time of
enrollment.
6. Patients without tissue available will still be eligible for the trial.
Updated on
29 May 2025.
Study ID: PHO-UCSF-PNOC-COMP, 22237
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