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AIRBIII: Measuring Collaborative Networks among Parents and Autism Intervention Providers during the Pre-transition Period
Poster presenting results from focus group study looking at transitions of children with autism.
Pilot Data Findings: Connections between Low-Resource Parents of Children with ASD and School Providers Pre- and Post-Transitions between Schools
Care Coordination: Testing Associations between Social Networks and the Perceived Transition Success for Low Resource Children with ASD
ASD Support Networks and the Services Cliff: Mapping Social Capital Inequalities for Young Adults with ASD Post-Transition.
Mapping Gender Inequalities for Young Adults with ASD Using Egocentric Social Network Measures Organized session: Gender and social networks
Talk reporting on gender differences in the social networks of young adults with autism.
Background: A few online tools to facilitate communication and resource sharing among treatment and education team members working with children with autism have been developed. To date, no studies have investigated how these interfaces affect collaboration among users. There are no standard ways of measuring team interaction on digital interfaces. Rigorous measurement of these interactions will provide new knowledge about the impact that digital interfaces have on care coordination and outcomes. We developed, using R programming, a method to map digital social networks as a promising approach for studying team dynamics on digital interfaces for individuals with autism. Objectives: To demonstrate how networks of communication and resource sharing can be inferred from measurements of electronic activity of team members, and how reports about that communication can be built to support team interactions.Methods: As part of the pilot of a larger, multi-site HRSA study, we asked autism support teams to use a social networking application designed to facilitate communication between teachers and parents. We asked teams to use the tool during the implementation of two interventions: 1) a school transition support intervention implemented before, during, and after the child�s transition between schools and 2) diagnosis to treatment intervention, implemented post diagnosis for families without services. Data was collected from the application and then, using R, transformed to describe activity and communication on each of the teams. These variables were then built into reports delivered to study coordinators.Results: By using the application, members of the support teams were able to create and share calendar events, links, documents, pictures, and resources that work for the child. We experienced some challenges getting the data out of the application but once we did, the data provided a clear picture of real time, actual communication of teams. Using R, data from these teams were used to build hover reports, describing communication and activity of those teams. These reports were then given to site administrators to help them understand what team members at their sites were doing. For the pilot, we successfully extracted the data from the app and computed average counts of different types of interaction (e.g. posting a link to the team), as well as the average numberof roles present on each team.Conclusions: Online tools present an opportunity for teams providing support to children with autism spectrum disorder to communicate and share resources and knowledge. Researchers and other entities can hover over communication in these online tools to measure actual collaboration within these teams to both measure them and to provide feedback that can better focus or guide future intervention.
Using Social Network Analysis to Measure Community Collaborations in the Autism Intervention Research Network
Report On the Community Partnership research being done with the HRSA AIRB3 Grant. This work studies organizational communication of organizations that provide autism related services to low income families.
Social Capital Inequalities: Measuring Autism Resources Embedded in the Egocentric Treatment Networks of Children with ASD
Influence of Standardized Orientation on Patient Perception of Perioperative Care following Alveolar Cleft Repair: A Survey Based Study of Patients Treated in a Large Academic Medical Center
Published in The Cleft Palate-Craniofacial Journal, 2017
This study aims to better understand patient-reported outcomes for iliac bone grafting surgery for alveolar cleft repair and to determine how standardizing perioperative patient instruction affects patient-reported outcomes.
Recommended citation: Chang, B. L., Wilson, A. J., Chin, B. C., Friedman, C., & Jackson, O. A. (2016). Influence of Standardized Orientation on Patient Perception of Perioperative Care Following Alveolar Cleft Repair: A Survey Based Study of Patients Treated in a Large Academic Medical Center. The Cleft Palate-Craniofacial Journal, 54(3), 287 - 294. https://journals.sagepub.com/doi/abs/10.1597/15-234
Quantifying Pediatric Facial Palsy: Using Digital Image Correlation to Objectively Characterize Pediatric Facial Symmetry
Published in The Cleft Palate-Craniofacial Journal, 2017
This study introduces digital image correlation (DIC) as a novel technology to objectively quantify pediatric facial symmetry.
Recommended citation: Chang, B. L., Wilson, A. J., Samra, F., Konieczny, T., Percec, I., Lanning, M., Friedman, C., and Jackson, O. (2018). Quantifying Pediatric Facial Palsy: Using Digital Image Correlation to Objectively Characterize Pediatric Facial Symmetry.The Cleft Palate-Craniofacial Journal, 55(1), 119 - 126. https://journals.sagepub.com/doi/full/10.1177/1055665617721927
Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable
Published in Pilot and feasibility Studies, 2020
Children with autism spectrum disorder (ASD) benefit when their caregivers can effectively advocate for appropriate services. Barriers to caregiver engagement such as provider mistrust, cultural differences, stigma, and lack of knowledge can interfere with timely service access. We describe Mind the Gap (MTG), an intervention that provides education about ASD, service navigation, and other topics relevant to families whose children have a new ASD diagnosis. MTG was developed via community partnerships and is explicitly structured to reduce engagement barriers (e.g., through peer matching, meeting flexibility, culturally-informed practices). We also present on the results of a pilot of MTG, conducted in preparation for a randomized controlled trial.
Recommended citation: Iadarola, S., Pellecchia, M., Stahmer, A. et al. Mind the gap: an intervention to support caregivers with a new autism spectrum disorder diagnosis is feasible and acceptable. Pilot Feasibility Stud 6, 124 (2020). https://doi.org/10.1186/s40814-020-00662-6 https://link.springer.com/article/10.1186/s40814-020-00662-6
Analysis of Network Characteristics to Assess Community Capacity of Latino-Serving Organizations in Philadelphia
Published in Journal of Urban Health, 2021
Latino immigrants are disproportionately impacted by substance use, HIV/AIDS, domestic violence, and mental health (SAVAME). The burden of these syndemic conditions is influenced by limited access to health and social services to prevent and treat these conditions. The syndemic nature of these factors necessitates an integrated, coordinated approach to address them simultaneously. We analyzed characteristics of Latino-serving organizations in Philadelphia, PA, that provide SAVAME-related health and/or social services…
Recommended citation: Dsouza, N., McGhee-Hassrick, E., Giordano, K. et al. Analysis of Network Characteristics to Assess Community Capacity of Latino-Serving Organizations in Philadelphia. J Urban Health 98, 654Ð664 (2021). https://doi.org/10.1007/s11524-021-00535-0 https://link.springer.com/article/10.1007/s11524-021-00535-0
Identifying disparities across race, ethnicity, and gender in pediatric neuro-oncology clinical research-from patient to provider
Published in Cancer Epidemiology Biomarkers and Prevention, 2022
Literature has shown that racial, ethnic, and gender disparities exist among clinical research participants and within the ranks of academic institutions. To assess this and develop solutions to potential disparities in pediatric neuro-oncology, the Pacific Pediatric Neuro-Oncology Consortium (PNOC) and Children's Brain Tumor Network (CBTN) Diversity, Equity, and Inclusion (DEI) working group distributed a survey to all members of the consortia regarding the state of DEI in our research environments. In parallel, the working group collated clinical data from a public CBTN dataset and a PNOC clinical trial patient cohort to assess racial, ethnic, and gender differences in clinical research participation and outcomes.
Recommended citation: Emily Marshall, Tom Belle Davidson, Jeffrey Stevens, Kristina Cole, Fatema Malbari, Tabitha Cooney, Lance Ballaster, Kaitlin Lehmann, Shannon Robins, Miguel Brown, Christopher Blackden, Christopher Friedman, Ammar Naqvi, Jonathan Waller, Ximena Cueller, Jennifer Mason, Jena Lilly, Phillip Jay B Storm, Adam Resnick, Michael Prados, Sabine Mueller, Angela Waanders, Cassie Kline; Abstract PO-116: Identifying disparities across race, ethnicity, and gender in pediatric neuro-oncology clinical research - from patient to provider. Cancer Epidemiol Biomarkers Prev 1 January 2022; 31 (1_Supplement): POÐ116. https://doi.org/10.1158/1538-7755.DISP21-PO-116 https://aacrjournals.org/cebp/article-abstract/31/1_Supplement/PO-116/676170
The children’s brain tumor network (CBTN)-Accelerating research in pediatric central nervous system tumors through collaboration and open science
Published in Neoplasia, 2023
Pediatric brain tumors are the leading cause of cancer-related death in children in the United States and contribute a disproportionate number of potential years of life lost compared to adult cancers. Moreover, survivors frequently suffer long-term side effects, including secondary cancers. The Children's Brain Tumor Network (CBTN) is a multi-institutional international clinical research consortium created to advance therapeutic development through the collection and rapid distribution of biospecimens and data via open-science research platforms for real-time access and use by the global research community. The CBTN's 32 member institutions utilize a shared regulatory governance architecture at the Children's Hospital of Philadelphia to accelerate and maximize the use of biospecimens and data. As of August 2022, CBTN has enrolled over 4700 subjects, over 1500 parents,Êand collected over 65,000ÊÉ
Recommended citation: Lilly, J., Rokita, J. L., Mason, J., Patton, T. S., Stefankiewiz, S., Higgins, D., Trooskin, G., Larouci, C. A., Arya, K., Appert, E., Heath, A., Zhu, Y., Brown, M., Zhang, B., Farrow, B., Robins, S., Morgan, A. J., Nguyen, T. Q., Frenkel, E., . . . Waanders, A. J. (2023). The childrenÕs brain tumor network (CBTN) - Accelerating research in pediatric central nervous system tumors through collaboration and open science. Neoplasia, 35, 100846. https://doi.org/10.1016/j.neo.2022.100846 https://www.sciencedirect.com/science/article/pii/S1476558622000720
Expansion of the Pediatric Brain Tumor Atlas: Children’s Brain Tumor Network, Kids First Data Resource and Childhood Cancer Data Initiative Open Science effort
Published in Cancer Research, 2023
Pediatric central nervous system (CNS) cancers are the leading disease-related cause of death in children and there is urgent need for curative therapeutic strategies for these tumors. To address the urgency, ChildrenÕs Brain Tumor Network (CBTN) has advanced an open science model to accelerate the research discovery for pediatric brain tumors. In first phase of Open Pediatric Brain Tumor Atlas (OpenPBTA) effort CBTN together with Pacific Pediatric Neuro-Oncology Consortium (PNOC) with support of Gabriella Miller Kids First Data Resource Center (KFDRC) created and comprehensively characterized over 1000 clinically annotated pediatric brain tumors.
Recommended citation: Mateusz P. Koptyra, Komal Rahti, Yuankun Zhu, Bailey Farrow, Daniel Miller, Adam Kraya, Yiran Guo, Peter Madsen, Nicholas Van Kuren, Xiaoyan Huang, Miguel A. Brown, Jennifer L. Mason, Meen Chul Kim, Allison P. Heath, Brian M. Ennis, Bo Zhang, Jena V. Lilly, Jo Lynne Rokita, Christopher Friedman, Ximena P. Cuellar, Catherine A. Sullivan, Noel Coleman, Trang Duros, Thinh Q. Nguyen, Emmett C. Drake, Zeinab Helili, Beth A. Frenkel, Gerri R. Trooskin, Ariana Familiar, Karthik Viswanathan, Christopher M. Beck, Madison L. Hollawell, Valerie P. Baubet, Cassie Kline, Mariarita Santi, Tatiana S. Patton, Stephanie Stefankiewicz, Arya Kamnaa, Ryan A. Velasco, Dani Cardona, Phillip J. Storm, Adam C. Resnick, o/b/o Children's Brain Tumor Network; Abstract 3566: Expansion of the Pediatric Brain Tumor Atlas: Children's Brain Tumor Network, Kids First Data Resource and Childhood Cancer Data Initiative Open Science effort. Cancer Res 1 April 2023; 83 (7_Supplement): 3566. https://doi.org/10.1158/1538-7445.AM2023-3566 https://aacrjournals.org/cancerres/article/83/7_Supplement/3566/720161
Establishing a multimodal data warehousing platform to accelerate discoveries in pediatric brain tumors for the ChildrenÕs Brain Tumor Network
Published in Cancer Research, 2023
Brain tumors are the leading cause of disease-related death in children and young adults ages under 19 in largely populated countries such as the United States. In one year alone, 4,000 children and young adults will be diagnosed with a brain or central nervous system tumor in the United States…
Recommended citation: Farrow, B. K., Van Kuren, N., Young, N., Friedman, C., Kim, M. C., Lubneuski, A., Mason, J., Nguyen, T., Helili, Z., Frenkel, E., Sullivan, C., Familiar, A., Zhu, Y., Koptyra, M., Patton, T., Lilly, J., Storm, P. B., Resnick, A., & Heath, A. P. (2023). Abstract 3565: Establishing a multimodal data warehousing platform to accelerate discoveries in pediatric brain tumors for the ChildrenÕs Brain Tumor Network. Cancer Research, 83(7_Supplement), 3565. https://doi.org/10.1158/1538-7445.am2023-3565 https://aacrjournals.org/cancerres/article/83/7_Supplement/3565/720162