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Ajidd-American Journal on Intellectual and Developmental Disabilities最新文献

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Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability. 精准医学研究中的团队科学：纳入智障成人的案例。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-05-01 DOI: 10.1352/1944-7558-130.3.171
Maya Sabatello, Katherine E McDonald
{"title":"Team Science in Precision Medicine Research:The Case for Inclusion of Adults With Intellectual Disability.","authors":"Maya Sabatello, Katherine E McDonald","doi":"10.1352/1944-7558-130.3.171","DOIUrl":"10.1352/1944-7558-130.3.171","url":null,"abstract":"<p><p>The inclusion of adults with intellectual disability (ID) in precision medicine research has scientific, public health, and social justice justifications. Yet there is an indication that this population is excluded from general (i.e., nondisability specific) health research, including precision medicine research. Adults with ID are thus unlikely to reap the benefits emerging from such scientific endeavors-today and in the future. In this commentary, we explore key issues in research ethics, including cohort diversity, the principle of justice, and consent, and discuss their ramifications for adults with ID and precision medicine researchers. We call for endorsing team science collaboration and community engagement to promote health equity for adults with ID and disability justice in precision medicine research.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 3","pages":"171-177"},"PeriodicalIF":1.9,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12124407/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144057776","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Executive and Social Functioning in Fetal Alcohol Spectrum Disorders: Comparison to Autism. 胎儿酒精谱系障碍的执行和社会功能：与自闭症的比较。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-05-01 DOI: 10.1352/1944-7558-130.3.209
Natalie H Stagnone, John C Thorne, Julia T Mattson, Sara T Kover
{"title":"Executive and Social Functioning in Fetal Alcohol Spectrum Disorders: Comparison to Autism.","authors":"Natalie H Stagnone, John C Thorne, Julia T Mattson, Sara T Kover","doi":"10.1352/1944-7558-130.3.209","DOIUrl":"https://doi.org/10.1352/1944-7558-130.3.209","url":null,"abstract":"<p><p>Executive function is an area of challenge for both children with fetal alcohol spectrum disorders (FASD) and children with autism spectrum disorder (ASD). Parent ratings of everyday executive function relate to a range of outcomes, including social functioning in ASD. Comparisons between FASD and ASD have revealed both overlapping and distinct skills, but have not addressed executive function or its relation to social function. Utilizing parent report, the current study addressed relative strengths and weaknesses across scales of everyday executive function, as well as group differences between FASD and ASD. The association between executive function and social function was also evaluated. Participants with FASD (n = 23) and ASD (n = 18) were preschool and school-age children whose caregivers completed the Behavior Rating Inventory of Executive Function (BRIEF, BRIEF-2, or BRIEF-P) and the Social Responsiveness Scale, Second Edition. For both groups and all examined executive function scales, scores exceeded the normative mean, indicating challenges. The groups differed significantly on only one executive function scale: working memory. In both groups, executive function was positively correlated with social functioning, even when controlling for nonverbal IQ. The current findings highlight an overlapping association between executive function and social function in FASD and ASD.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 3","pages":"209-227"},"PeriodicalIF":1.9,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144016859","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Modeling the Latent Factor Structure of the "EXcEEDS" (EXecutive function Early Evaluation in Down Syndrome) Battery. “exceed”（唐氏综合症执行功能早期评估）模型的潜在因素结构
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-05-01 DOI: 10.1352/1944-7558-130.3.195
Kaylyn Van Deusen, Mark A Prince, Madison M Walsh, Lina R Patel, Miranda E Pinks, Anna J Esbensen, Angela John Thurman, Leonard Abbeduto, Courtney Oser, Lisa A Daunhauer, Deborah J Fidler
{"title":"Modeling the Latent Factor Structure of the \"EXcEEDS\" (EXecutive function Early Evaluation in Down Syndrome) Battery.","authors":"Kaylyn Van Deusen, Mark A Prince, Madison M Walsh, Lina R Patel, Miranda E Pinks, Anna J Esbensen, Angela John Thurman, Leonard Abbeduto, Courtney Oser, Lisa A Daunhauer, Deborah J Fidler","doi":"10.1352/1944-7558-130.3.195","DOIUrl":"https://doi.org/10.1352/1944-7558-130.3.195","url":null,"abstract":"<p><p>Executive function (EF) is frequently an area of vulnerability in conditions associated with intellectual disability, like Down syndrome (DS). However, current EF evaluation approaches are not designed for children with underlying neurodevelopmental conditions and may not demonstrate construct validity due to interpretational confounds. The current study evaluated the construct validity of a novel battery designed to reduce measurement confounds in the assessment of EF in young children with DS. Participants were 124 children with DS (ages 2 to 8 years) who completed a set of adapted EF tasks. Exploratory graph analysis demonstrated that a two-factor solution (an Inhibition factor and a Working Memory/Flexibility factor) was the best fit for the data, providing evidence of construct validity for the adapted EF battery.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 3","pages":"195-208"},"PeriodicalIF":1.9,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12066155/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143991761","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Evaluation of a Modified Corsi Task to Assess Visuospatial Short-Term Memory in Young Children With Down Syndrome. 改进的Corsi任务评估唐氏综合症儿童视觉空间短期记忆。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-05-01 DOI: 10.1352/1944-7558-130.3.178
Miranda E Pinks, Kaylyn Van Deusen, Mark A Prince, Anna J Esbensen, Angela John Thurman, Lina R Patel, Leonard Abbeduto, Madison M Walsh, Lisa A Daunhauer, Deborah J Fidler
{"title":"Evaluation of a Modified Corsi Task to Assess Visuospatial Short-Term Memory in Young Children With Down Syndrome.","authors":"Miranda E Pinks, Kaylyn Van Deusen, Mark A Prince, Anna J Esbensen, Angela John Thurman, Lina R Patel, Leonard Abbeduto, Madison M Walsh, Lisa A Daunhauer, Deborah J Fidler","doi":"10.1352/1944-7558-130.3.178","DOIUrl":"10.1352/1944-7558-130.3.178","url":null,"abstract":"<p><p>Short-term memory (STM) challenges are often observed in children with Down syndrome (DS), but existing early STM measures introduce measurement confounds in this population. To address the need for valid early STM measures for future DS interventions, this study evaluated the psychometric properties of a modified Corsi Span task, administered to 110 children with DS. Results indicated that the modified Corsi task has feasibility in the age range of 5-8 years and is scalable across chronological and mental ages. Minimal practice effects and evidence of test-retest reliability and convergent validity were observed. Implications for using a modified Corsi task in studies of early STM and treatment trials for children with DS are discussed.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 3","pages":"178-194"},"PeriodicalIF":1.9,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12118606/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144060140","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Effects of Stepped Cognitive Behavioral Therapy on Child Depressive and Externalizing Symptoms in Autistic Children With Anxiety. 阶梯式认知行为治疗对孤独症伴焦虑儿童抑郁和外化症状的影响。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-05-01 DOI: 10.1352/1944-7558-130.3.228
Catherine E Rast, Andrew G Guzick, Keaton J Soileau, Orri Smarason, Leandra N Berry, Robin P Goin-Kochel, Wayne K Goodman, Sophie C Schneider, Alison Salloum, Eric A Storch
{"title":"Effects of Stepped Cognitive Behavioral Therapy on Child Depressive and Externalizing Symptoms in Autistic Children With Anxiety.","authors":"Catherine E Rast, Andrew G Guzick, Keaton J Soileau, Orri Smarason, Leandra N Berry, Robin P Goin-Kochel, Wayne K Goodman, Sophie C Schneider, Alison Salloum, Eric A Storch","doi":"10.1352/1944-7558-130.3.228","DOIUrl":"https://doi.org/10.1352/1944-7558-130.3.228","url":null,"abstract":"<p><p>Despite the strong evidence basis for the treatment of anxiety in autistic youth, accessibility remains a significant challenge. Stepped care addresses this gap, although there is limited research into its broad effects in autistic youth with anxiety. In this project, 76 autistic youth with anxiety entered parent-led-bibliotherapy for 12 weeks; 44 stepped up to receive therapist-led cognitive behavioral therapy (CBT). Those who did not step up entered a maintenance phase. Youth were assessed for externalizing and depressive symptoms at mid-treatment, post-treatment, and 3 months after treatment (3MFU). Focal symptoms decreased across groups at all timepoints; those who entered maintenance experienced greater decreases. At 3MFU there were no differences between groups. Parents were assessed for depression, anxiety, and stress at the same timepoints; no significant changes were observed.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 3","pages":"228-243"},"PeriodicalIF":1.9,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144045723","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Increasing Access to Early Diagnosis and Assessment of Autism Via Biomarker-Based Measurements of Social Visual Engagement. 通过基于生物标志物的社会视觉参与测量增加自闭症早期诊断和评估的机会。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-05-01 DOI: 10.1352/1944-7558-130.3.167
Ami Klin
{"title":"Increasing Access to Early Diagnosis and Assessment of Autism Via Biomarker-Based Measurements of Social Visual Engagement.","authors":"Ami Klin","doi":"10.1352/1944-7558-130.3.167","DOIUrl":"https://doi.org/10.1352/1944-7558-130.3.167","url":null,"abstract":"<p><p>Only one in every five children with autism is diagnosed before the age of 3 years. As a result, tens of thousands of children every year in the United States miss benefiting from early interventions and supports that could potentially optimize their lifetime outcomes. A major obstacle is the extremely limited access to high quality diagnosis. To address this challenge, biomarker-based objective procedures for early diagnosis and assessment of autism have already been clinically validated and cleared for broad implementation by the U.S. Food and Drug Administration. Broad community uptake of these science-based solutions, however, will require change in entrenched models of diagnostic care, and aggressive prioritization of the needs of the community at large.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 3","pages":"167-170"},"PeriodicalIF":1.9,"publicationDate":"2025-05-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144032479","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey. 唐氏综合症调查中成功（和不成功）的招募方法和参与者的流失。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-03-01 DOI: 10.1352/1944-7558-130.2.131
Mikayla Shaffer, John Patrick T Co, Karen Donelan, Brian G Skotko, Amy Torres, Jonathan P Winickoff, Stephanie L Santoro
{"title":"Successful (and Unsuccessful) Recruitment Approaches and Participant Loss in a Down Syndrome Survey.","authors":"Mikayla Shaffer, John Patrick T Co, Karen Donelan, Brian G Skotko, Amy Torres, Jonathan P Winickoff, Stephanie L Santoro","doi":"10.1352/1944-7558-130.2.131","DOIUrl":"10.1352/1944-7558-130.2.131","url":null,"abstract":"<p><p>We recruited caregivers of individuals ages 0-21 with Down syndrome (DS) to complete an electronic survey. Multiple recruitment sources and methods were used. From 2023-2024, we received 542 valid, complete survey responses. We found the most success with use of DS affiliate organizations, the DS-Connect® contact registry for DS, and outreach to DS clinic patients. Of those who started the screener, 1,569 people screened in and were eligible; of those eligible, 730 (46.5%) consented. We experienced bots and fraudsters despite efforts to minimize those respondents from the outset. We present lessons learned in surveying caregivers from a low-incidence medical condition, with focus on our experience with invalid respondents, to inform other researchers conducting survey research related to genetic syndromes.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"131-145"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12243944/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143505921","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Gender Differences in Self-Reported Social Participation in Adults With Autism. 自闭症成人社会参与自我报告的性别差异。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-03-01 DOI: 10.1352/1944-7558-130.2.81
Wei Song, Mark S Salzer, Hillary R Steinberg, Lindsay L Shea
{"title":"Gender Differences in Self-Reported Social Participation in Adults With Autism.","authors":"Wei Song, Mark S Salzer, Hillary R Steinberg, Lindsay L Shea","doi":"10.1352/1944-7558-130.2.81","DOIUrl":"10.1352/1944-7558-130.2.81","url":null,"abstract":"<p><p>There is a lack of research on gender differences in adults' with autism participation in social activities (i.e., activities that provide interactions with others in the community). Using a large statewide sample (N = 775, 217 females and 558 males), we examined gender differences in the social participation of adults with autism while considering the presence of an intellectual disability (ID). No gender differences were found in total participation days. However, women with autism without ID reported participating in lower percentages of social activities that were important to them and perceiving sufficient participation in lower percentages of these important social activities than their male counterparts. They also reported lower satisfaction with participation level (i.e., perceived sufficiency in participation in important social activities) in social activities that were important to them than women with autism with ID. Implications of findings for understanding gender differences in autism across the life course are discussed.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"81-87"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143505877","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Caregiver ECHO: A Model for Delivering Virtual Behavior Management Education to Families of Children With Neurodevelopmental Disorders. 照顾者ECHO：为神经发育障碍儿童家庭提供虚拟行为管理教育的模型。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-03-01 DOI: 10.1352/1944-7558-130.2.104
Rose E Nevill, Gail E Lovette, Katherine J Bateman, Natalie M Badgett, Genevieve R Lyons, Emily C Fuhrmann, Genevieve E Bohac, Karen G Orlando, Keith D Page
{"title":"Caregiver ECHO: A Model for Delivering Virtual Behavior Management Education to Families of Children With Neurodevelopmental Disorders.","authors":"Rose E Nevill, Gail E Lovette, Katherine J Bateman, Natalie M Badgett, Genevieve R Lyons, Emily C Fuhrmann, Genevieve E Bohac, Karen G Orlando, Keith D Page","doi":"10.1352/1944-7558-130.2.104","DOIUrl":"10.1352/1944-7558-130.2.104","url":null,"abstract":"<p><p>Children with neurodevelopmental disorders (NDD) are at high risk of challenging behavior, yet families experience consistent barriers to affordable parent education in behavior management. This study tested the efficacy of a caregiver-focused Extensions of Community Health Outcomes (ECHO) program in delivering behavior management education and support to caregivers of children with NDD. A pre-post design was used to evaluate impact on 30 caregivers' behavioral knowledge, self-efficacy in managing challenging behavior, empowerment, and negative emotional reactions to challenging behavior. Participation resulted in significant improvements across outcomes and high satisfaction. The Caregiver ECHO model offers advantages in that it emphasizes peer learning, active problem solving, and community building as core components of its approach while using low-cost methodologies.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"104-115"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143505873","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Relationships Between Bioecological Factors and Expectations for Community Living and Participation Outcomes Among Individuals With Intellectual Disability and Families: A Scoping Review. 生物生态因素与智障个体和家庭社区生活期望和参与结果的关系：一项范围综述。
IF 1.9 4区 医学
Ajidd-American Journal on Intellectual and Developmental Disabilities Pub Date : 2025-03-01 DOI: 10.1352/1944-7558-130.2.88
Grace L Francis, Christina DeCostanza Eagle, Sarah H Espanol, Kelly Conn-Reda, Alexandra S Reed, Emil Majetich, Jodi M Duke, Heather L Walter
{"title":"Relationships Between Bioecological Factors and Expectations for Community Living and Participation Outcomes Among Individuals With Intellectual Disability and Families: A Scoping Review.","authors":"Grace L Francis, Christina DeCostanza Eagle, Sarah H Espanol, Kelly Conn-Reda, Alexandra S Reed, Emil Majetich, Jodi M Duke, Heather L Walter","doi":"10.1352/1944-7558-130.2.88","DOIUrl":"10.1352/1944-7558-130.2.88","url":null,"abstract":"<p><p>Although community living and participation (CLP) is associated with increased economic self-sufficiency, rates of happiness, and high quality of life among individuals with intellectual disability (ID), the rates of individuals with ID experiencing CLP outcomes remain below their same-age peers. Although the expectations of individuals with ID and their family members influence CLP outcomes, which bioecological factors have the greatest influence on expectations remains largely unknown, thereby weakening the foundations upon which efforts and policies designed to enhance CLP are developed. The purpose of this scoping review was to map knowledge of relationships between bioecological factors and CLP expectations from the perspectives of individuals with ID and families of individuals with ID. Recommendations for research, policy, and practices are described.</p>","PeriodicalId":51508,"journal":{"name":"Ajidd-American Journal on Intellectual and Developmental Disabilities","volume":"130 2","pages":"88-103"},"PeriodicalIF":1.9,"publicationDate":"2025-03-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143505883","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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