Development and validation of a streamlined autism case confirmation approach for use in epidemiologic risk factor research in prospective cohorts / Craig J. NEWSCHAFFER in Autism Research, 10-3 (March 2017)  

Public ISBD [article]  inAutism Research > 10-3 (March 2017) . - p.485-501 Titre : Development and validation of a streamlined autism case confirmation approach for use in epidemiologic risk factor research in prospective cohorts Type de document : texte imprimé Auteurs : Craig J. NEWSCHAFFER, Auteur ; Emily SCHRIVER, Auteur ; Lindsay BERRIGAN, Auteur ; Rebecca LANDA, Auteur ; Wendy L. STONE, Auteur ; Somer L. BISHOP, Auteur ; Diane BURKOM, Auteur ; Anne GOLDEN, Auteur ; Lisa V. IBANEZ, Auteur ; Alice KUO, Auteur ; Kimberly D. LAKES, Auteur ; Daniel S. MESSINGER, Auteur ; Sarah J. PATERSON, Auteur ; Zachary WARREN, Auteur Article en page(s) : p.485-501 Langues : Anglais (eng) Mots-clés : autism  ASD  case-confirmation  epidemiology  diagnosis  novel assessments Index. décimale : PER Périodiques Résumé : The cost associated with incorporating standardized observational assessments and diagnostic interviews in large-scale epidemiologic studies of autism spectrum disorders (ASD) risk factors can be substantial. Streamlined approaches for confirming ASD case status would benefit these studies. We conducted a multi-site, cross-sectional criterion validity study in a convenience sample of 382 three-year olds scheduled for neurodevelopmental evaluation. ASD case classification as determined by three novel assessment instruments (the Early Video-guided Autism Screener E-VAS; the Autism Symptom Interview, ASI; the Screening Tool for Autism in Toddlers Expanded, STAT-E) each designed to be administered in less than 30 minutes by lay staff, was compared to ADOS scores and DSM-based diagnostic assessment from a qualified clinician. Sensitivity and specificity of each instrument alone and in combination were estimated. Alternative cutpoints were identified under different criteria and two-stage cross validation was used to avoid overfitting. Findings were interpreted in the context of a large, prospective pregnancy cohort study utilizing a two-stage approach to case identification. Under initial cutpoints, sensitivity ranged from 0.63 to 0.92 and specificity from 0.35 to 0.70. Cutpoints giving equal weight to sensitivity and specificity resulted in sensitivity estimates ranging from 0.45 to 0.83 and specificity ranging from 0.49 to 0.86. Several strategies were well-suited for application as a second-stage case-confirmation. These included the STAT-E alone and the parallel administration of both the E-VAS and the ASI. Use of more streamlined methods of case-confirmation in large-scale prospective cohort epidemiologic investigations of ASD risk factors appears feasible. En ligne : http://dx.doi.org/10.1002/aur.1659 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=304 [article] Development and validation of a streamlined autism case confirmation approach for use in epidemiologic risk factor research in prospective cohorts [texte imprimé] / Craig J. NEWSCHAFFER, Auteur ; Emily SCHRIVER, Auteur ; Lindsay BERRIGAN, Auteur ; Rebecca LANDA, Auteur ; Wendy L. STONE, Auteur ; Somer L. BISHOP, Auteur ; Diane BURKOM, Auteur ; Anne GOLDEN, Auteur ; Lisa V. IBANEZ, Auteur ; Alice KUO, Auteur ; Kimberly D. LAKES, Auteur ; Daniel S. MESSINGER, Auteur ; Sarah J. PATERSON, Auteur ; Zachary WARREN, Auteur . - p.485-501. Langues : Anglais (eng) in Autism Research > 10-3 (March 2017) . - p.485-501 Mots-clés : autism  ASD  case-confirmation  epidemiology  diagnosis  novel assessments Index. décimale : PER Périodiques Résumé : The cost associated with incorporating standardized observational assessments and diagnostic interviews in large-scale epidemiologic studies of autism spectrum disorders (ASD) risk factors can be substantial. Streamlined approaches for confirming ASD case status would benefit these studies. We conducted a multi-site, cross-sectional criterion validity study in a convenience sample of 382 three-year olds scheduled for neurodevelopmental evaluation. ASD case classification as determined by three novel assessment instruments (the Early Video-guided Autism Screener E-VAS; the Autism Symptom Interview, ASI; the Screening Tool for Autism in Toddlers Expanded, STAT-E) each designed to be administered in less than 30 minutes by lay staff, was compared to ADOS scores and DSM-based diagnostic assessment from a qualified clinician. Sensitivity and specificity of each instrument alone and in combination were estimated. Alternative cutpoints were identified under different criteria and two-stage cross validation was used to avoid overfitting. Findings were interpreted in the context of a large, prospective pregnancy cohort study utilizing a two-stage approach to case identification. Under initial cutpoints, sensitivity ranged from 0.63 to 0.92 and specificity from 0.35 to 0.70. Cutpoints giving equal weight to sensitivity and specificity resulted in sensitivity estimates ranging from 0.45 to 0.83 and specificity ranging from 0.49 to 0.86. Several strategies were well-suited for application as a second-stage case-confirmation. These included the STAT-E alone and the parallel administration of both the E-VAS and the ASI. Use of more streamlined methods of case-confirmation in large-scale prospective cohort epidemiologic investigations of ASD risk factors appears feasible. En ligne : http://dx.doi.org/10.1002/aur.1659 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=304

Enhancing multi-site autism research through the development of a collaborative data platform / Jeffrey D. ROTH ; Kashia A. ROSENAU ; Patrick DWYER ; Alice 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 Auteurs : Jeffrey D. ROTH, Auteur ; Kashia A. ROSENAU, Auteur ; Patrick DWYER, Auteur ; Alice 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] / Jeffrey D. ROTH, Auteur ; Kashia A. ROSENAU, Auteur ; Patrick DWYER, Auteur ; Alice 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

Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations / Anne M. ROUX in Autism Research, 16-3 (March 2023)  

Public ISBD [article]  inAutism Research > 16-3 (March 2023) . - p.480-496 Titre : Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations Type de document : texte imprimé Auteurs : Anne M. ROUX, Auteur ; Lindsay L. SHEA, Auteur ; Hillary STEINBERG, Auteur ; Jessica E. RAST, Auteur ; Kristy A. ANDERSON, Auteur ; Emily HOTEZ, Auteur ; Kashia A. ROSENAU, Auteur ; Alice KUO, Auteur ; Evva ASSING-MURRAY, Auteur ; Paul T. SHATTUCK, Auteur Article en page(s) : p.480-496 Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : Abstract Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants. En ligne : https://doi.org/10.1002/aur.2890 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498 [article] Evidence from the Autism Transitions Research Project (2017-2022): Capstone review and services research recommendations [texte imprimé] / Anne M. ROUX, Auteur ; Lindsay L. SHEA, Auteur ; Hillary STEINBERG, Auteur ; Jessica E. RAST, Auteur ; Kristy A. ANDERSON, Auteur ; Emily HOTEZ, Auteur ; Kashia A. ROSENAU, Auteur ; Alice KUO, Auteur ; Evva ASSING-MURRAY, Auteur ; Paul T. SHATTUCK, Auteur . - p.480-496. Langues : Anglais (eng) in Autism Research > 16-3 (March 2023) . - p.480-496 Index. décimale : PER Périodiques Résumé : Abstract Few funding sources have explicitly supported systems-wide research to identify mechanisms for improving access, service delivery, outcomes and wellbeing for autistic transition-age youth and young adults. We aimed to integrate findings from research produced through a five-year federal Autism Transition Research Project (ATRP) cooperative agreement. This capstone review sought to: (1) map the body of scientific evidence that emerged from this federal award, and (2) identify remaining evidence gaps to inform future autism transition services research. We used scoping review methods to assess 31 ATRP-funded published scientific studies. We charted study characteristics, topical domains, socio-ecological levels of variables, focus on equity, and inclusion of autistic participants. We evaluated how these topics were addressed across studies to identify continued gaps in the evidence base. Compared to prior published reviews and research agendas, we found improvements in characterization of study participants, broader examination of socio-ecological correlates, and examination of multiple outcome domains. However, we also identified continued deficits in inclusion of autistic study participants, use of multisectoral data, and research with a strong focus on equity. Our recommended priorities for autism transition services research to facilitate healthy life outcomes and wellbeing included: continued analysis of population-level data and improved data infrastructure; development of service delivery methods and interventions that target marginalized groups; expanded research to inform improvements in the performance and coordination of complex service ecosystems that interface with autistic youth; and bolstering the roles of autistic research participants. En ligne : https://doi.org/10.1002/aur.2890 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=498

Health Needs and College Readiness in Autistic Students: The Freshman Survey Results / Priyanka FERNANDES in Journal of Autism and Developmental Disorders, 51-10 (October 2021)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 51-10 (October 2021) . - p.3506-3513 Titre : Health Needs and College Readiness in Autistic Students: The Freshman Survey Results Type de document : texte imprimé Auteurs : Priyanka FERNANDES, Auteur ; Madeline HALEY, Auteur ; Kevin EAGAN, Auteur ; Paul T. SHATTUCK, Auteur ; Alice KUO, Auteur Article en page(s) : p.3506-3513 Langues : Anglais (eng) Mots-clés : Achievement  Adult  Autism Spectrum Disorder  Autistic Disorder  Humans  Students  United States  Universities  Young Adult  Autism  College  Health Index. décimale : PER Périodiques Résumé : With an increase in the diagnosis of autism spectrum disorder in the United States, many of whom have higher intellectual ability, there is a predicted increase in the number of college-bound students. Affected young adults face a "Services Cliff" as they transition into adulthood. Our study examined a nationally represented sample of freshman students and found that academic achievements in autistic students are comparable to their peers when they first enter college. The students however have more mental health and physical health problems compared to their non-autistic peers. Poor health maybe a major contributing factor to the lower graduation rates among autistic students. College-bound autistic students may continue to require services through college for them to be successful and graduate. En ligne : http://dx.doi.org/10.1007/s10803-020-04814-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=453 [article] Health Needs and College Readiness in Autistic Students: The Freshman Survey Results [texte imprimé] / Priyanka FERNANDES, Auteur ; Madeline HALEY, Auteur ; Kevin EAGAN, Auteur ; Paul T. SHATTUCK, Auteur ; Alice KUO, Auteur . - p.3506-3513. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 51-10 (October 2021) . - p.3506-3513 Mots-clés : Achievement  Adult  Autism Spectrum Disorder  Autistic Disorder  Humans  Students  United States  Universities  Young Adult  Autism  College  Health Index. décimale : PER Périodiques Résumé : With an increase in the diagnosis of autism spectrum disorder in the United States, many of whom have higher intellectual ability, there is a predicted increase in the number of college-bound students. Affected young adults face a "Services Cliff" as they transition into adulthood. Our study examined a nationally represented sample of freshman students and found that academic achievements in autistic students are comparable to their peers when they first enter college. The students however have more mental health and physical health problems compared to their non-autistic peers. Poor health maybe a major contributing factor to the lower graduation rates among autistic students. College-bound autistic students may continue to require services through college for them to be successful and graduate. En ligne : http://dx.doi.org/10.1007/s10803-020-04814-8 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=453

Parents’ Perspectives on the Role of Pediatricians in Autism Diagnosis / Amy SUDHINARASET in Journal of Autism and Developmental Disorders, 43-3 (March 2013)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 43-3 (March 2013) . - p.747-748 Titre : Parents’ Perspectives on the Role of Pediatricians in Autism Diagnosis Type de document : texte imprimé Auteurs : Amy SUDHINARASET, Auteur ; Alice KUO, Auteur Article en page(s) : p.747-748 Langues : Anglais (eng) Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1007/s10803-012-1591-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=192 [article] Parents’ Perspectives on the Role of Pediatricians in Autism Diagnosis [texte imprimé] / Amy SUDHINARASET, Auteur ; Alice KUO, Auteur . - p.747-748. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 43-3 (March 2013) . - p.747-748 Index. décimale : PER Périodiques En ligne : http://dx.doi.org/10.1007/s10803-012-1591-z Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=192

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