The study is being done to learn more about the long-term health and well-being of participants treated for medulloblastoma. The study is to decide which evaluations focusing on therapy-related lasting effects (or toxicities) should be considered.
Medulloblastoma outcomes have improved with contemporary therapies including modern neurosurgical techniques and risk-adapted radiotherapy and chemotherapy regimens. However, survivors remain at risk for long-term health problems such as neurocognitive deficits, hearing loss, impaired cardiorespiratory fitness and physical performance, cardiac and neuroendocrine dysfunction, musculoskeletal conditions, and infertility.
Diagnosis of any subtype of medulloblastoma between the ages of 3 to 22 years or between the ages of 22 to 44 years with the sonic hedgehog (SHH) subtype of medulloblastoma
Radiotherapy on or according to the SJMB12 protocol
Received radiotherapy at St. Jude Children's Research Hospital
5 or more years since the initiation of radiation therapy and who did not have evidence of disease progression
Participants or their legal guardian/representative are unwilling or unable to provide written informed consent.
Participants who had relapsed or refractory disease during or following completion of treatment for medulloblastoma
All participants who meet eligibility criteria and consent to enrollment on the study.
Cohort
Prospective
Not listed
To describe and compare the long-term health outcomes among medulloblastoma survivors treated with radiation therapy on or according to the SJMB12 protocol with varying craniospinal doses, chemotherapy regimens, and radiation modalities.
In the SJLIFE study Survivors will undergo the SJLIFE core battery of testing with a focus on outcomes for which early evidence has demonstrated the potential association between proton therapy and reduced late-effect burden. Testing includes neuromuscular function, laboratory testing, neurocognitive assessments, physiologic assessments, and outcome questionnaires.
To correlate the spatial distribution of radiation dose with neurologic, endocrine, cognitive, and physiologic outcomes among a subset of medulloblastoma survivors, using both conventional and voxel-based analysis.
Subjects selected for the Brainatomy2 study will undergo a one-time investigational MRI/fMRI study designed to target working memory and processing speed. The investigational MRI/fMRI exam includes Axial T2 weighted imaging for post-surgical and post-radiotherapy assessment of brain parenchymal changes, and 3D isometric voxel T1 volume imaging for structural analysis of the whole brain. It also employs pulsed ASL technique for voxel-based cerebral blood flow assessment and diffusion imaging to generate ADC and FA maps, normalizing anatomical connectivity maps to the T1 volume. Additionally, resting-state functional MRI (fMRI) provides whole brain coverage for analyzing temporal co-activation in BOLD fMRI maps in relation to cognitive testing results.
Analyze regional differences in brain activity using fMRI among medulloblastoma survivors treated with different craniospinal doses, chemotherapy regimens and radiation modalities.
Subjects selected for Brainatomy2 will undergo a one-time investigational MRI/fMRI exam for post-surgical and post-radiotherapy assessment of brain parenchymal changes, and structural analysis of the whole brain. The exploratory endpoints focus on imaging assessments: Perfusion imaging with median regional cerebral blood flow map registration to T1 MPRAGE structural brain imaging, Diffusion and Diffusion Tensor Imaging with median Apparent Diffusion Coefficient map registration to structural brain imaging, including the generation of whole-brain anatomic connectivity maps, and Resting state fMRI with whole brain coverage, analyzing differences in functional connectivity between processing speed groups through voxel-by-voxel comparisons.
To investigate the long-term impact of posterior fossa syndrome among medulloblastoma survivors including neurological brain activity with cognitive function.
fMRI maps brain activity associated with cognitive functions such as memory, attention, language, and executive function. It can reveal patterns of brain reorganization corresponding with cognitive test scores and declines in performance. By integrating fMRI findings with cognitive testing and other measures, we can study differences in treatment such as craniospinal dose and better understand the neural mechanisms underlying cognitive disorders and related complications. fMRI findings can be mapped to the spatial distribution of radiation dose using conventional and voxel-based analysis.
To investigate the long-term impact of posterior fossa syndrome among medulloblastoma survivors including speech and language.
To determine impact of speech and language, hearing is evaluated with tympanometry, pure-tone audiometry at 250, 500, 1000, 2000, 3000, 4000, 6000, and 8000 Hz, and speech audiometry in quiet. Speech-in-noise tests measure the ability to hear and understand speech in background noise.
To assess health-related quality of life (HRQOL) among medulloblastoma survivors treated with different craniospinal doses, chemotherapy regimens, and radiation modalities.
We will utilize these instruments in addition to the SJLIFE Comprehensive Health Form to evaluate quality of life. This 23-item questionnaire encompasses physical functioning, emotional functioning, social functioning, and school functioning. Items are scored to create a Psychosocial Health Summary Score (0 to 100 scale), with a higher score indicating better health-related quality of life (HRQOL). Self-report measures are available for children and adolescents aged 5 to 18 years, and parent proxy-report measures are available for those aged 2 to 18 years.
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