Assessment of Caregiver Inventory for Rett Syndrome / Jane B. LANE in Journal of Autism and Developmental Disorders, 47-4 (April 2017)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 47-4 (April 2017) . - p.1102-1112 Titre : Assessment of Caregiver Inventory for Rett Syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Jane B. LANE, Auteur ; Amber R. SALTER, Auteur ; Nancy E. JONES, Auteur ; Gary CUTTER, Auteur ; Joseph HORRIGAN, Auteur ; Steve A. SKINNER, Auteur ; Walter E. KAUFMANN, Auteur ; Daniel G. GLAZE, Auteur ; Jeffrey L. NEUL, Auteur ; Alan K. PERCY, Auteur Article en page(s) : p.1102-1112 Langues : Anglais (eng) Mots-clés : Rett syndrome  Caregiver  Inventory  MECP2  Factor analysis Index. décimale : PER Périodiques Résumé : Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher’s exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach’s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder. En ligne : http://dx.doi.org/10.1007/s10803-017-3034-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=304 [article] Assessment of Caregiver Inventory for Rett Syndrome [Texte imprimé et/ou numérique] / Jane B. LANE, Auteur ; Amber R. SALTER, Auteur ; Nancy E. JONES, Auteur ; Gary CUTTER, Auteur ; Joseph HORRIGAN, Auteur ; Steve A. SKINNER, Auteur ; Walter E. KAUFMANN, Auteur ; Daniel G. GLAZE, Auteur ; Jeffrey L. NEUL, Auteur ; Alan K. PERCY, Auteur . - p.1102-1112. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 47-4 (April 2017) . - p.1102-1112 Mots-clés : Rett syndrome  Caregiver  Inventory  MECP2  Factor analysis Index. décimale : PER Périodiques Résumé : Rett syndrome (RTT) requires total caregiver attention and leads to potential difficulties throughout life. The Caregiver Burden Inventory, designed for Alzheimer disease, was modified to a RTT Caregiver Inventory Assessment (RTT CIA). Reliability and face, construct, and concurrent validity were assessed in caregivers of individuals with RTT. Chi square or Fisher’s exact test for categorical variables and t tests or Wilcoxon two-sample tests for continuous variables were utilized. Survey completed by 198 caregivers; 70 caregivers completed follow-up assessment. Exploratory factor analysis revealed good agreement for physical burden, emotional burden, and social burden. Internal reliability was high (Cronbach’s alpha 0.898). RTT CIA represents a reliable and valid measure, providing a needed metric of caregiver burden in this disorder. En ligne : http://dx.doi.org/10.1007/s10803-017-3034-3 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=304

Autism in Genetic Intellectual Disability : Insights into Idiopathic Autism / Walter E. KAUFMANN

Public ISBD contenu dans Autism / Andrew W. ZIMMERMAN Titre : Autism in Genetic Intellectual Disability : Insights into Idiopathic Autism Type de document : Texte imprimé et/ou numérique Auteurs : Walter E. KAUFMANN, Auteur ; George T. CAPONE, Auteur ; Megan CLARKE, Auteur ; Dejan B. BUDIMIROVIC, Auteur Année de publication : 2008 Importance : p.81-108 Langues : Anglais (eng) Index. décimale : AUT-B AUT-B - L'Autisme - Ouvrages généraux et scientifiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=703 contenu dans Autism / Andrew W. ZIMMERMAN Autism in Genetic Intellectual Disability : Insights into Idiopathic Autism [Texte imprimé et/ou numérique] / Walter E. KAUFMANN, Auteur ; George T. CAPONE, Auteur ; Megan CLARKE, Auteur ; Dejan B. BUDIMIROVIC, Auteur . - 2008 . - p.81-108. Langues : Anglais (eng) Index. décimale : AUT-B AUT-B - L'Autisme - Ouvrages généraux et scientifiques Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=703

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Development of a Video-based Evaluation Tool in Rett Syndrome / Sue FYFE in Journal of Autism and Developmental Disorders, 37-9 (October 2007)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 37-9 (October 2007) . - p.1636-1646 Titre : Development of a Video-based Evaluation Tool in Rett Syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Sue FYFE, Auteur ; Michael E. MSALL, Auteur ; Hayley C. LEONARD, Auteur ; Jenny DOWNS, Auteur ; C. ELLAWAY, Auteur ; Walter E. KAUFMANN, Auteur ; C. PHILIPPE, Auteur ; C. L. LAURVICK, Auteur ; J. LISTER, Auteur ; B. BURFORD, Auteur ; O. MCILROY, Auteur ; Sheena REILLY, Auteur Année de publication : 2007 Article en page(s) : p.1636-1646 Langues : Anglais (eng) Mots-clés : Rett-syndrome Video-analysis Functional-ability Movement-disorder Behavioural-phenotype Participatory-research Index. décimale : PER Périodiques Résumé : This paper describes the development of a video-based evaluation tool for use in Rett syndrome (RTT). Components include a parent-report checklist, and video filming and coding protocols that contain items on eating, drinking, communication, hand function and movements, personal care and mobility. Ninety-seven of the 169 families who initially agreed to participate returned a videotape within 8 months of the first request. Subjects whose videos were returned had a similar age profile to those who did not provide a video but were more likely to have classical than atypical RTT. Evidence of the content and social validity and inter-rater reliability on 11 videos is provided. Video may provide detailed, objective assessment of function and behaviour in RTT. En ligne : http://dx.doi.org/10.1007/s10803-006-0293-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=174 [article] Development of a Video-based Evaluation Tool in Rett Syndrome [Texte imprimé et/ou numérique] / Sue FYFE, Auteur ; Michael E. MSALL, Auteur ; Hayley C. LEONARD, Auteur ; Jenny DOWNS, Auteur ; C. ELLAWAY, Auteur ; Walter E. KAUFMANN, Auteur ; C. PHILIPPE, Auteur ; C. L. LAURVICK, Auteur ; J. LISTER, Auteur ; B. BURFORD, Auteur ; O. MCILROY, Auteur ; Sheena REILLY, Auteur . - 2007 . - p.1636-1646. Langues : Anglais (eng) in Journal of Autism and Developmental Disorders > 37-9 (October 2007) . - p.1636-1646 Mots-clés : Rett-syndrome Video-analysis Functional-ability Movement-disorder Behavioural-phenotype Participatory-research Index. décimale : PER Périodiques Résumé : This paper describes the development of a video-based evaluation tool for use in Rett syndrome (RTT). Components include a parent-report checklist, and video filming and coding protocols that contain items on eating, drinking, communication, hand function and movements, personal care and mobility. Ninety-seven of the 169 families who initially agreed to participate returned a videotape within 8 months of the first request. Subjects whose videos were returned had a similar age profile to those who did not provide a video but were more likely to have classical than atypical RTT. Evidence of the content and social validity and inter-rater reliability on 11 videos is provided. Video may provide detailed, objective assessment of function and behaviour in RTT. En ligne : http://dx.doi.org/10.1007/s10803-006-0293-9 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=174

Latent Class Analysis Identifies Distinctive Behavioral Subtypes in Children with Fragile X Syndrome / Melissa RASPA ; Carla M. BANN ; Julia M. GABLE ; Holly K. HARRIS ; Dejan B. BUDIMIROVIC ; Reymundo LOZANO ; Elizabeth BERRY-KRAVIS ; Milen VELINOV ; Amy L. TALBOY ; Stephanie L. SHERMAN ; Walter E. KAUFMANN ; Marcy SCHUSTER ; Nicole TARTAGLIA ; Robyn A. FILIPINK ; Dejan B. BUDIMIROVIC ; Deborah BARBOUTH ; Amy LIGHTBODY ; Allan REISS ; Carol M. DELAHUNTY ; Randi J. HAGERMAN ; David HESSL ; Craig A. ERICKSON ; Gary FELDMAN ; Jonathan D. PICKER ; Ave M. LACHIEWICZ ; Holly K. HARRIS ; Amy ESLER ; Richard E. FRYE ; Patricia A. EVANS ; Mary Ann MORRIS ; Barbara A. HAAS-GIVLER ; Andrea L. GROPMAN ; Ryan S. UY ; Carrie BUCHANAN ; Jean A. FRAZIER ; Stephanie M. MORRIS ; Forward CONSORTIUM in Journal of Autism and Developmental Disorders, 54-2 (February 2024)  

Public ISBD [article]  inJournal of Autism and Developmental Disorders > 54-2 (February 2024) . - p.725-737 Titre : Latent Class Analysis Identifies Distinctive Behavioral Subtypes in Children with Fragile X Syndrome Type de document : Texte imprimé et/ou numérique Auteurs : Melissa RASPA, Auteur ; Carla M. BANN, Auteur ; Julia M. GABLE, Auteur ; Holly K. HARRIS, Auteur ; Dejan B. BUDIMIROVIC, Auteur ; Reymundo LOZANO, Auteur ; Elizabeth BERRY-KRAVIS, Auteur ; Milen VELINOV, Auteur ; Amy L. TALBOY, Auteur ; Stephanie L. SHERMAN, Auteur ; Walter E. KAUFMANN, Auteur ; Marcy SCHUSTER, Auteur ; Nicole TARTAGLIA, Auteur ; Robyn A. FILIPINK, Auteur ; Dejan B. BUDIMIROVIC, Auteur ; Deborah BARBOUTH, Auteur ; Amy LIGHTBODY, Auteur ; Allan REISS, Auteur ; Carol M. DELAHUNTY, Auteur ; Randi J. HAGERMAN, Auteur ; David HESSL, Auteur ; Craig A. ERICKSON, Auteur ; Gary FELDMAN, Auteur ; Jonathan D. PICKER, Auteur ; Ave M. LACHIEWICZ, Auteur ; Holly K. HARRIS, Auteur ; Amy ESLER, Auteur ; Richard E. FRYE, Auteur ; Patricia A. EVANS, Auteur ; Mary Ann MORRIS, Auteur ; Barbara A. HAAS-GIVLER, Auteur ; Andrea L. GROPMAN, Auteur ; Ryan S. UY, Auteur ; Carrie BUCHANAN, Auteur ; Jean A. FRAZIER, Auteur ; Stephanie M. MORRIS, Auteur ; Forward CONSORTIUM, Auteur Article en page(s) : p.725-737 Index. décimale : PER Périodiques Résumé : Fragile X syndrome (FXS) is characterized by variable neurobehavioral abnormalities, which leads to difficulties in developing and evaluating treatments and in determining accurate prognosis. We employed a pediatric cross-sectional sample (1,072 males, 338 females) from FORWARD, a clinic-based natural history study, to identify behavioral subtypes by latent class analysis. Input included co-occurring behavioral conditions, sleep and sensory problems, autistic behavior scales (SCQ, SRS-2), and the Aberrant Behavior Checklist revised for FXS (ABCFX). A 5-class solution yielded the most clinically meaningful, pharmacotherapy independent behavioral groups with distinctive SCQ, SRS-2, and ABCFX profiles, and adequate non-overlap (??71%): ?Mild? (31%), ?Moderate without Social Impairment? (32%), ?Moderate with Social Impairment? (7%), ?Moderate with Disruptive Behavior? (20%), and ?Severe? (9%). Our findings support FXS subtyping, for improving clinical management and therapeutic development. En ligne : https://doi.org/10.1007/s10803-022-05821-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=520 [article] Latent Class Analysis Identifies Distinctive Behavioral Subtypes in Children with Fragile X Syndrome [Texte imprimé et/ou numérique] / Melissa RASPA, Auteur ; Carla M. BANN, Auteur ; Julia M. GABLE, Auteur ; Holly K. HARRIS, Auteur ; Dejan B. BUDIMIROVIC, Auteur ; Reymundo LOZANO, Auteur ; Elizabeth BERRY-KRAVIS, Auteur ; Milen VELINOV, Auteur ; Amy L. TALBOY, Auteur ; Stephanie L. SHERMAN, Auteur ; Walter E. KAUFMANN, Auteur ; Marcy SCHUSTER, Auteur ; Nicole TARTAGLIA, Auteur ; Robyn A. FILIPINK, Auteur ; Dejan B. BUDIMIROVIC, Auteur ; Deborah BARBOUTH, Auteur ; Amy LIGHTBODY, Auteur ; Allan REISS, Auteur ; Carol M. DELAHUNTY, Auteur ; Randi J. HAGERMAN, Auteur ; David HESSL, Auteur ; Craig A. ERICKSON, Auteur ; Gary FELDMAN, Auteur ; Jonathan D. PICKER, Auteur ; Ave M. LACHIEWICZ, Auteur ; Holly K. HARRIS, Auteur ; Amy ESLER, Auteur ; Richard E. FRYE, Auteur ; Patricia A. EVANS, Auteur ; Mary Ann MORRIS, Auteur ; Barbara A. HAAS-GIVLER, Auteur ; Andrea L. GROPMAN, Auteur ; Ryan S. UY, Auteur ; Carrie BUCHANAN, Auteur ; Jean A. FRAZIER, Auteur ; Stephanie M. MORRIS, Auteur ; Forward CONSORTIUM, Auteur . - p.725-737. in Journal of Autism and Developmental Disorders > 54-2 (February 2024) . - p.725-737 Index. décimale : PER Périodiques Résumé : Fragile X syndrome (FXS) is characterized by variable neurobehavioral abnormalities, which leads to difficulties in developing and evaluating treatments and in determining accurate prognosis. We employed a pediatric cross-sectional sample (1,072 males, 338 females) from FORWARD, a clinic-based natural history study, to identify behavioral subtypes by latent class analysis. Input included co-occurring behavioral conditions, sleep and sensory problems, autistic behavior scales (SCQ, SRS-2), and the Aberrant Behavior Checklist revised for FXS (ABCFX). A 5-class solution yielded the most clinically meaningful, pharmacotherapy independent behavioral groups with distinctive SCQ, SRS-2, and ABCFX profiles, and adequate non-overlap (??71%): ?Mild? (31%), ?Moderate without Social Impairment? (32%), ?Moderate with Social Impairment? (7%), ?Moderate with Disruptive Behavior? (20%), and ?Severe? (9%). Our findings support FXS subtyping, for improving clinical management and therapeutic development. En ligne : https://doi.org/10.1007/s10803-022-05821-7 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=520

Parent Report of Community Psychiatric Comorbid Diagnoses in Autism Spectrum Disorders / Rebecca E. ROSENBERG in Autism Research and Treatment, (June 2011)  

Public ISBD [article]  inAutism Research and Treatment > (June 2011) . - 10 p. Titre : Parent Report of Community Psychiatric Comorbid Diagnoses in Autism Spectrum Disorders Type de document : Texte imprimé et/ou numérique Auteurs : Rebecca E. ROSENBERG, Auteur ; Walter E. KAUFMANN, Auteur ; J. Kiely LAW, Auteur ; Paul A. LAW, Auteur Année de publication : 2011 Article en page(s) : 10 p. Langues : Anglais (eng) Index. décimale : PER Périodiques Résumé : We used a national online registry to examine variation in cumulative prevalence of community diagnosis of psychiatric comorbidity in 4343 children with autism spectrum disorders (ASD). Adjusted multivariate logistic regression models compared influence of individual, family, and geographic factors on cumulative prevalence of parent-reported anxiety disorder, depression, bipolar disorder, and attention deficit/hyperactivity disorder or attention deficit disorder. Adjusted odds of community-assigned lifetime psychiatric comorbidity were significantly higher with each additional year of life, with increasing autism severity, and with Asperger syndrome and pervasive developmental disorder—not otherwise specified compared with autistic disorder. Overall, in this largest study of parent-reported community diagnoses of psychiatric comorbidity, gender, autistic regression, autism severity, and type of ASD all emerged as significant factors correlating with cumulative prevalence. These findings could suggest both underlying trends in actual comorbidity as well as variation in community interpretation and application of comorbid diagnoses in ASD. En ligne : http://dx.doi.org/10.1155/2011/405849 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=149 [article] Parent Report of Community Psychiatric Comorbid Diagnoses in Autism Spectrum Disorders [Texte imprimé et/ou numérique] / Rebecca E. ROSENBERG, Auteur ; Walter E. KAUFMANN, Auteur ; J. Kiely LAW, Auteur ; Paul A. LAW, Auteur . - 2011 . - 10 p. Langues : Anglais (eng) in Autism Research and Treatment > (June 2011) . - 10 p. Index. décimale : PER Périodiques Résumé : We used a national online registry to examine variation in cumulative prevalence of community diagnosis of psychiatric comorbidity in 4343 children with autism spectrum disorders (ASD). Adjusted multivariate logistic regression models compared influence of individual, family, and geographic factors on cumulative prevalence of parent-reported anxiety disorder, depression, bipolar disorder, and attention deficit/hyperactivity disorder or attention deficit disorder. Adjusted odds of community-assigned lifetime psychiatric comorbidity were significantly higher with each additional year of life, with increasing autism severity, and with Asperger syndrome and pervasive developmental disorder—not otherwise specified compared with autistic disorder. Overall, in this largest study of parent-reported community diagnoses of psychiatric comorbidity, gender, autistic regression, autism severity, and type of ASD all emerged as significant factors correlating with cumulative prevalence. These findings could suggest both underlying trends in actual comorbidity as well as variation in community interpretation and application of comorbid diagnoses in ASD. En ligne : http://dx.doi.org/10.1155/2011/405849 Permalink : https://www.cra-rhone-alpes.org/cid/opac_css/index.php?lvl=notice_display&id=149

Psychometric Study of the Aberrant Behavior Checklist in Fragile X Syndrome and Implications for Targeted Treatment / Stephanie M. SANSONE in Journal of Autism and Developmental Disorders, 42-7 (July 2012)  

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Sensory Symptoms and Signs of Hyperarousal in Individuals with Fragile X Syndrome: Findings from the FORWARD Registry and Database Multisite Study / Ave M. LACHIEWICZ in Journal of Autism and Developmental Disorders, 54-11 (November)  

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Social Approach and Autistic Behavior in Children with Fragile X Syndrome / Jane E. ROBERTS in Journal of Autism and Developmental Disorders, 37-9 (October 2007)  

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Stability of Initial Autism Spectrum Disorder Diagnoses in Community Settings / Amy M. DANIELS in Journal of Autism and Developmental Disorders, 41-1 (January 2011)  

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Trends in Autism Spectrum Disorder Diagnoses: 1994–2007 / Rebecca E. ROSENBERG in Journal of Autism and Developmental Disorders, 39-8 (August 2009)  

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