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Development of informant-report neurobehavioral survey scales for PTEN hamartoma tumor syndrome and related neurodevelopmental genetic syndromes
There are few well-validated measures that are appropriate for assessing the full range of neurobehavioral presentations in PTEN hamartoma tumor syndrome (PHTS) and other neurodevelopmental genetic syndromes (NDGS). As potential therapeutics are developed, having reliable, valid, free, and easily accessible measures to track a range of neurobehavioral domains will be crucial for future clinical trials. This study focused on the development and initial psychometric evaluation of a set of freely available informant-report survey scales for PHTS-the Neurobehavioral Evaluation Tool (NET). Concept elicitation, quantitative ratings, and cognitive interviewing processes were conducted with stakeholders and clinician-scientist experts, used to identify the most important neurobehavioral domains for this population, and to ensure items were appropriate for the full range of individuals with PHTS. Results of this process identified a PHTS neurobehavioral impact model with 11 domains. The final NET scales assessing these domains were administered to a sample of 384 participants (median completion time = 20.6 min), including 32 people with PHTS, 141 with other NDGS, 47 with idiopathic neurodevelopmental disorder (NDD), and 164 neurotypical controls. Initial psychometric results for the total scores of each scale indicated very good model (ω = 0.83-0.99) and internal consistency reliability (α = 0.82-0.98) as well as excellent test-retest reproducibility at 1-month follow-up (r = 0.78-0.98) and stability at 4-month follow-up (r = 0.76-0.96). Conditional reliability estimates indicated very strong measurement precision in key score ranges for assessing PHTS and other people with NDGS and/or idiopathic NDD. Comparisons across domains between PHTS and the other groups revealed specific patterns of symptoms and functioning, including lower levels of challenging behavior and more developed daily living and executive functioning skills relative to other NDGS. The NET appears to be a reliable and potentially useful tool for clinical characterization and monitoring of neurobehavioral symptoms in PHTS and may also have utility in the assessment of other NDGS and idiopathic NDD. Additional validation work, including convergent and discriminant validity analyses, are needed to replicate and extend these observations
NSF SSTEM MIRRORS Data 2018-2021
With five years of funding from the National Science Foundation\u27s Scholarships in Science, Technology, Engineering and Mathematics (S-STEM) program, John Carroll University (JCU) will provide scholarships to 32 students with demonstrated financial need and academic promise. The scholarships will be awarded to first-year and transfer students who are pursuing bachelor\u27s degrees in STEM in Biology, Chemistry, Mathematics, Computer Science and Physics. The Scholars in the program will receive academic support that includes a STEM-specific orientation, a summer bridge program, cohort advising, and curricula introducing scientific thinking and research.The project goals are to improve one-year retention and four-year graduation rates, and to train and graduate scholars who will meet local, regional, and national demands for a STEM-educated workforce. This project will provide evidence-based academic and student support services designed to support the transition and success of JCU transfer student cohorts. These services include a STEM living-learning community (LLC), peer-led team learning, career development, summer research fellowships, and travel to scientific meetings. This project will contribute to education research by investigating the role of reflection (i.e., conscientious evaluation of new knowledge or experiences) in the development of student-scientists, and the influence of STEM LLCs on student persistence and sense of well-being. The ongoing process of reflection is critical for academic success, social well-being, and vocational self-efficacy. However, the importance of reflection as a tool for success in STEM disciplines is unknown. This project will assess reflection as a tool to increase retention and performance in STEM experimentally, by monitoring performance indicators for S-STEM Scholars compared to the pool of S-STEM-eligible students who were not selected for a scholarship and therefore did not participate in the program\u27s reflection activities. Finally, this project will help provide S-STEM students the opportunity to be successful in high-demand STEM disciplines