Enhancing multi-site autism research through the development of a collaborative data platform / Jeffrey D. ROTH ; Kashia A. ROSENAU ; Patrick S. DWYER ; Alice A. KUO ; Julian A. MARTINEZ-AGOSTO in Autism Research, 17-7 (July 2024)  

Public ISBD [article]  inAutism Research > 17-7 (July 2024) . - p.1322-1327 Titre : Enhancing multi-site autism research through the development of a collaborative data platform Type de document : Texte imprimé et/ou numérique Auteurs : Jeffrey D. ROTH, Auteur ; Kashia A. ROSENAU, Auteur ; Patrick S. DWYER, Auteur ; Alice A. KUO, Auteur ; Julian A. MARTINEZ-AGOSTO, Auteur Article en page(s) : p.1322-1327 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Data repositories, particularly those storing data on vulnerable populations, increasingly need to carefully consider not only what data is being collected, but how it will be used. As such, the Autism Intervention Research Network on Physical Health (AIR-P) has created the Infrastructure for Collaborative Research (ICR) to establish standards on data collection practices in Autism repositories. The ICR will strive to encourage inter-site collaboration, amplify autistic voices, and widen accessibility to data. The ICR is staged as a three-tiered framework consisting of (1) a request for proposals system, (2) a REDCap-based data repository, and (3) public data dashboards to display aggregate de-identified data. Coupled with a review process including autistic and non-autistic researchers, this framework aims to propel the implementation of equitable autism research, enhance standardization within and between studies, and boost transparency and dissemination of findings. In addition, the inclusion of a contact registry that study participants can opt into creates the base for a robust participant pool. As such, researchers can leverage the platform to identify, reach, and distribute electronic materials to a greater proportion of potential participants who likely fall within their eligibility criteria. By incorporating practices that promote effective communication between researchers and participants, the ICR can facilitate research that is both considerate of and a benefit to autistic people. En ligne : https://dx.doi.org/https://doi.org/10.1002/aur.3167 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=533 [article] Enhancing multi-site autism research through the development of a collaborative data platform [Texte imprimé et/ou numérique] / Jeffrey D. ROTH, Auteur ; Kashia A. ROSENAU, Auteur ; Patrick S. DWYER, Auteur ; Alice A. KUO, Auteur ; Julian A. MARTINEZ-AGOSTO, Auteur . - p.1322-1327. Langues : Anglais (eng) in Autism Research > 17-7 (July 2024) . - p.1322-1327 Index. décimale : PER Périodiques Résumé : Abstract Data repositories, particularly those storing data on vulnerable populations, increasingly need to carefully consider not only what data is being collected, but how it will be used. As such, the Autism Intervention Research Network on Physical Health (AIR-P) has created the Infrastructure for Collaborative Research (ICR) to establish standards on data collection practices in Autism repositories. The ICR will strive to encourage inter-site collaboration, amplify autistic voices, and widen accessibility to data. The ICR is staged as a three-tiered framework consisting of (1) a request for proposals system, (2) a REDCap-based data repository, and (3) public data dashboards to display aggregate de-identified data. Coupled with a review process including autistic and non-autistic researchers, this framework aims to propel the implementation of equitable autism research, enhance standardization within and between studies, and boost transparency and dissemination of findings. In addition, the inclusion of a contact registry that study participants can opt into creates the base for a robust participant pool. As such, researchers can leverage the platform to identify, reach, and distribute electronic materials to a greater proportion of potential participants who likely fall within their eligibility criteria. By incorporating practices that promote effective communication between researchers and participants, the ICR can facilitate research that is both considerate of and a benefit to autistic people. En ligne : https://dx.doi.org/https://doi.org/10.1002/aur.3167 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=533

Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research / Hillary K. SCHILTZ in Autism Research, 17-4 (April 2024)  

Public ISBD [article]  inAutism Research > 17-4 (April 2024) . - p.690-701 Titre : Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research Type de document : Texte imprimé et/ou numérique Auteurs : Hillary K. SCHILTZ, Auteur ; Zachary J. WILLIAMS, Auteur ; Shuting ZHENG, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Hannah E. MORTON, Auteur ; Kashia A. ROSENAU, Auteur ; Christina NICOLAIDIS, Auteur ; Alexandra STURM, Auteur ; Catherine LORD, Auteur ; Autism PROMNET, Auteur Article en page(s) : p.690-701 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families. En ligne : https://doi.org/10.1002/aur.3114 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=526 [article] Measurement matters: A commentary on the state of the science on patient reported outcome measures (PROMs) in autism research [Texte imprimé et/ou numérique] / Hillary K. SCHILTZ, Auteur ; Zachary J. WILLIAMS, Auteur ; Shuting ZHENG, Auteur ; Elizabeth A. KAPLAN-KAHN, Auteur ; Hannah E. MORTON, Auteur ; Kashia A. ROSENAU, Auteur ; Christina NICOLAIDIS, Auteur ; Alexandra STURM, Auteur ; Catherine LORD, Auteur ; Autism PROMNET, Auteur . - p.690-701. Langues : Anglais (eng) in Autism Research > 17-4 (April 2024) . - p.690-701 Index. décimale : PER Périodiques Résumé : Abstract High quality science relies upon psychometrically valid and reliable measurement, yet very few Patient Reported Outcome Measures (PROMs) have been developed or thoroughly validated for use with autistic individuals. The present commentary summarizes the current state of autism PROM science, based on discussion at the Special Interest Group (SIG) at the 2022 International Society for Autism Research (INSAR) Annual Meeting and collective expertise of the authors. First, we identify current issues in autism PROM research including content and construct operationalization, informant-structure, measure accessibility, and measure validation and generalization. We then enumerate barriers to conducting and disseminating this research, such as a lack of guidance, concerns regarding funding and time, lack of accessible training and professionals with psychometric skills, difficulties collecting large representative samples, and challenges with dissemination. Lastly, we offer future priorities and resources to improve PROMs in autism research including a need to continue to evaluate and develop PROMs for autistic people using robust methods, to prioritize diverse and representative samples, to expand the breadth of psychometric properties and techniques, and to consider developing field specific guidelines. We remain extremely optimistic about the future directions of this area of autism research. This work is well positioned to have an immense, positive impact on our scientific understanding of autism and the everyday lives of autistic people and their families. En ligne : https://doi.org/10.1002/aur.3114 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=526

Practitioner Adherence and Competence in MEYA, a Free Online Self-Instruction Program in Modular Psychotherapy and Counseling for Children?s Autism-Related Clinical Needs / Jeffrey J. WOOD ; Karen S. Wood ; Kashia A. ROSENAU ; An Chuen Cho ; Amanda R. Johnson ; Virginia S. Muscatello ; Ingrid S. Tien ; Jolie Straus ; Samara Wolpe ; Ari Zeldin ; Kristofer Kazlauskas ; Bryce D. MCLEOD in Journal of Autism and Developmental Disorders, 55-2 (February 2025)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 55-2 (February 2025) . - p.472-486 Titre : Practitioner Adherence and Competence in MEYA, a Free Online Self-Instruction Program in Modular Psychotherapy and Counseling for Children?s Autism-Related Clinical Needs : Journal of Autism and Developmental Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Jeffrey J. WOOD, Auteur ; Karen S. Wood, Auteur ; Kashia A. ROSENAU, Auteur ; An Chuen Cho, Auteur ; Amanda R. Johnson, Auteur ; Virginia S. Muscatello, Auteur ; Ingrid S. Tien, Auteur ; Jolie Straus, Auteur ; Samara Wolpe, Auteur ; Ari Zeldin, Auteur ; Kristofer Kazlauskas, Auteur ; Bryce D. MCLEOD, Auteur Article en page(s) : p.472-486 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : The quality of care in public schools and other community settings for school-aged youths on the autism spectrum is variable and often not evidence-based. Training practitioners in these settings to deliver evidence-based practices (EBPs) may improve the quality of care. We developed a free internet-based training and clinical guidance system synthesizing multiple EBPs for youth on the autism spectrum addressing a range of mental health needs and autism-related behaviors, entitled Modular EBPs for Youth on the Autism Spectrum (MEYA; meya.ucla.edu). A multiple baseline study was conducted with seven practitioners recruited from mental health practice settings across the United States who were providing services to children on the autism spectrum (aged 6 to 17 years). Practitioners were randomly assigned to undergo baseline conditions of 2 to 8 weeks. Once online training in MEYA commenced, practitioners engaged in algorithm-guided self-instruction in EBPs for autism. Participants video-recorded sessions. Independent coders used the MEYA Fidelity Scale (MEYA-FS) to rate adherence and competence in EBPs for autism. Practitioners also completed measures pertaining to implementation outcomes and parents rated youth outcomes on personalized target behaviors. Five of seven practitioners increased their adherence to MEYA practices (i.e., MEYA-FS scores) following MEYA training. Findings for competence were similar, though somewhat less robust. Practitioners generally viewed MEYA as feasible, understandable, and acceptable. Most youth outcomes improved during MEYA. A randomized, controlled trial of MEYA would be helpful in characterizing its effectiveness for supporting practitioner EBP implementation and youth outcomes in school and community service settings. En ligne : https://doi.org/10.1007/s10803-023-06226-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=548 [article] Practitioner Adherence and Competence in MEYA, a Free Online Self-Instruction Program in Modular Psychotherapy and Counseling for Children?s Autism-Related Clinical Needs : Journal of Autism and Developmental Disorders [Texte imprimé et/ou numérique] / Jeffrey J. WOOD, Auteur ; Karen S. Wood, Auteur ; Kashia A. ROSENAU, Auteur ; An Chuen Cho, Auteur ; Amanda R. Johnson, Auteur ; Virginia S. Muscatello, Auteur ; Ingrid S. Tien, Auteur ; Jolie Straus, Auteur ; Samara Wolpe, Auteur ; Ari Zeldin, Auteur ; Kristofer Kazlauskas, Auteur ; Bryce D. MCLEOD, Auteur . - p.472-486. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 55-2 (February 2025) . - p.472-486 Index. décimale : PER Périodiques Résumé : The quality of care in public schools and other community settings for school-aged youths on the autism spectrum is variable and often not evidence-based. Training practitioners in these settings to deliver evidence-based practices (EBPs) may improve the quality of care. We developed a free internet-based training and clinical guidance system synthesizing multiple EBPs for youth on the autism spectrum addressing a range of mental health needs and autism-related behaviors, entitled Modular EBPs for Youth on the Autism Spectrum (MEYA; meya.ucla.edu). A multiple baseline study was conducted with seven practitioners recruited from mental health practice settings across the United States who were providing services to children on the autism spectrum (aged 6 to 17 years). Practitioners were randomly assigned to undergo baseline conditions of 2 to 8 weeks. Once online training in MEYA commenced, practitioners engaged in algorithm-guided self-instruction in EBPs for autism. Participants video-recorded sessions. Independent coders used the MEYA Fidelity Scale (MEYA-FS) to rate adherence and competence in EBPs for autism. Practitioners also completed measures pertaining to implementation outcomes and parents rated youth outcomes on personalized target behaviors. Five of seven practitioners increased their adherence to MEYA practices (i.e., MEYA-FS scores) following MEYA training. Findings for competence were similar, though somewhat less robust. Practitioners generally viewed MEYA as feasible, understandable, and acceptable. Most youth outcomes improved during MEYA. A randomized, controlled trial of MEYA would be helpful in characterizing its effectiveness for supporting practitioner EBP implementation and youth outcomes in school and community service settings. En ligne : https://doi.org/10.1007/s10803-023-06226-w Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=548

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