Tres cartas sobre los vicios de la instrucción pública en España y proyecto de un plan para su reforma
In: Memoria y crítica de la educación
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In: Memoria y crítica de la educación
We aimed at identifying early non-social behavioural indicators that predict later ASD. Likewise, we were interested in the moment in which non-social signs discriminate between children at elevated likelihood for ASD with a later diagnosis of ASD, and children at elevated likelihood for ASD with a typical developmental outcome. In addition, we intended to explore the developmental evolution of children's symptomatology over time. A systematic literature search was conducted for longitudinal studies on early non-social behavioural indicators among siblings at elevated likelihood for ASD. The following databases were searched: PUBMED, Web of Science, PsycINFO, CINAHL and EMBASE. The study identification process was conducted by two reviewers independently. Compared to siblings at elevated likelihood for ASD with a typical developmental outcome, siblings at elevated likelihood for ASD with later ASD show impairments in attention disengagement, in gross and fine motor development and characteristic restricted and repetitive interests and behaviours, starting at 12 months of age. Moreover, early attention disengagement exerts a predictive role towards a later ASD diagnosis, given that from 12 months siblings at elevated likelihood for ASD who will receive an independent ASD diagnosis towards 24-36 months present marked difficulties in disengaging in comparison with siblings at elevated likelihood for ASD that will not satisfy the criteria for an ASD diagnosis. The findings call for a more comprehensive vision on early indicators of ASD. Further research is needed to extend results to other behavioural domains. ; Open Access funding provided by Projekt DEAL. This study was funded by The Autism Spectrum Disorders in the European Union project (ASDEU). The ASDEU project has been granted by DG-SANTE, European Commission [Grant number SANCO/2014/C2/035]. ; Canu, D (reprint author), Hasselt Unvers, Rehabil Res Ctr REVAL, Fac Rehabil Sci, Agoralaan,Bldg A, B-3590 Diepenbeek, Hasselt, Belgium; Univ Ghent, Dept Expt Clin & Hlth Psychol, Res Dev Disorders Lab, Ghent, Belgium; Univ Freiburg, Med Ctr, Fac Med, Clin Child & Adolescent Psychiat Psychotherapy &, Freiburg, Germany. daniela.canu@uniklinik-freiburg.de
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8 pages, 3 tables.-- PMID: 16911019 [PubMed]. ; The INMA (INfancia y Medio Ambiente [Environment and Childhood]) is a population-based cohort study in different Spanish cities, that focuses on prenatal environmental exposures and growth, development and health from early fetal life until childhood. The study focuses on five primary areas of research: (1) growth and physical development; (2) behavioural and cognitive development; (3) asthma and allergies; (4) sexual and reproductive development; and (5) environmental exposure pathways. The general aims of the project are: (1) to describe the degree of individual prenatal exposure to environmental pollutants, and the internal dose of chemicals during pregnancy, at birth and during childhood in Spain; (2) to evaluate the impact of the exposure to different contaminants on fetal and infant growth, health and development; (3) to evaluate the role of diet on fetal and infant growth, health and development; and (4) to evaluate the interaction between persistent pollutants, nutrients and genetic determinants on fetal and infant growth, health and development ; Extensive assessments will be carried out on 3100 pregnant women and children. Data will be collected by physical examinations, questionnaires, interviews, ultrasound and biological samples. Pregnant women are being assessed at 12, 20 and 32 weeks of gestation to collect information about environmental exposures and fetal growth. The children will be followed until the age of 4 years. ; We are grateful to all the mothers, their partners and the children who are taking part in the INMA Study, and to the midwives, obstetricians and paediatricians for their co-operation and help in recruitment and following up of the cohorts. This study could not have been undertaken without the financial support of the 'Instituto de Salud Carlos III' (G03/176) and 'RCESP' (C03/09). This study has also been supported in part by the 'Fundació "La Caixa"' for the Ribera d'Ebre cohort (97/009-00 and 00/077-00), the 'Fondo de Investigación Sanitaria' for the Valencia cohort (FIS 031615), the Menorca cohort (97/0588 and 00/0021-02), Asturias cohort (PI04-2018) and other PI04-1436, PI041509, PI041705, PI041666, PI041931, PI 04/2646, and the European Union Commission (QLK4-1999-01422) and Junta de Andalucía SAS (202/04) for the Granada cohort, and the Menorca cohort (QLK4-2000-00263). ; Peer reviewed
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In: Public health genomics, Band 18, Heft 1, S. 20-25
ISSN: 1662-8063
The European Union (EU) policy for healthcare requires the establishment of a system of European Reference Networks, union-wide information databases, and registries for rare diseases (RDs) based on shared criteria. In pursuing its goals, the 'Building Consensus and Synergies for the EU Registration of RD Patients in Europe' (EPIRARE) project convened a meeting with experts of the competent health authorities to discuss the role of national institutional RD patient registries in supporting EU patient registration and the room for international cooperation. With this aim, this paper comparatively analyses the current situation of national institutional RD registries in the EU.
18 pages, 2 figures, 3 tables.-- PMID: 15913055 [PubMed]. ; [ESP] Cada vez existe mayor evidencia de la influencia de la dieta y de la exposición a dosis bajas de tóxicos durante la etapa prenatal y primera infancia sobre la salud y el bienestar en etapas posteriores de la vida. Siguiendo las recomendaciones de la OMS y de la Unión Europea en el año 2003 se constituyó la Red de Investigación Cooperativa Infancia y Medio Ambiente para estudiar los efectos del medio ambiente y la dieta en el desarrollo fetal e infantil en diversas zonas geográficas en España. La Red integra diversos grupos multidisciplinares de investigación y está constituida por seis cohortes, tres preexistentes y tres de novo, que seguirán de forma prospectiva a 3.600 mujeres embarazadas, desde el inicio del embarazo hasta los 4-6 años del niño. Los objetivos generales de la red son: (1) Describir la exposición individual a tóxicos ambientales durante la gestación y la primera infancia. (2) Evaluar los efectos de la exposición a tóxicos y de la dieta en el desarrollo fetal e infantil. (3) Evaluar la interacción entre factores tóxicos, nutricionales y genéticos en el desarrollo fetal e infantil. El seguimiento se realiza en cada trimestre de la gestación, al nacimiento, al año y hasta los cuatro o seis años del niño. La información se recoge mediante cuestionarios, datos clínicos, exploración física, ecografías, biomarcadores y mediciones ambientales. En este trabajo se presentan las características generales de la red y se describe la situación actual de cada una de las cohortes. ; [ENG] Increasingly greater evidence exists as to the influence which diet and exposure to low doses of toxic substances during the prenatal stage and early childhood has on health and well-being throughout later stages of life. Following the WHO and European Union recommendations in 2003, the Cooperative Environment and Childhood Research Network was set up to study the effects of the environment and diet on fetal and early childhood development in different geographical areas of Spain. This Network integrates different multidisciplinary research groups and is comprised of six cohorts - three pre-existing and three de novo - which will follow up prospectively 3,600 pregnant women, from the start of pregnancy up to age 4-6 years of the child. This network's general objectives are: (1) To describe individual exposure to toxic substances in the environment during gestation and early childhood. (2) To evaluate the effects of exposure to toxic substances and diet on fetal and early childhood development. (3) To evaluate the interaction among toxic, nutritional and genetic factors in fetal and early childhood development. The follow-up is done every three months during gestation, at birth, at age one and up to age four or six. The information is gathered by means of questionnaires, clinical data, physical examinations, echographs, biomarkers and environmental measurements. The general characteristics of the network and a description of the current situation of each one of the cohorts are provided in this study. ; La Red no se hubiera podido poner en marcha sin el apoyo económico del Instituto de Salud Carlos III (G03/176). El Estudio INMA ha recibido también ayudas de «Fundació La Caixa» para la cohorte de Ribera d'Ebre (97/009-00 and 00/077-00); de la Comisión de la Unión Europea (QLK4-1999-01422) para la cohorte de Granada; del «Fondo de Investigación Sanitaria» (FIS 031615), del Ministerio de Ciencia y Tecnología (SAF 2002-03508), de la Generalitat Valenciana, Conselleria d'Empresa, Universitat i Ciencia (g03/136) para la cohorte de Valencia; del «Fondo de Investigación Sanitaria» (97/0588 y 00/0021-02) y de la Comisión de la Unión Europea (QLK4-2000-00263) para la cohorte de Menorca. ; Peer reviewed
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International audience ; The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
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International audience ; The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
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International audience The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
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International audience ; The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
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The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services. ; This study was funded by the European Parliament and managed by the European Union, DGSANTE [Ref.: SANCO/2014/C2/035]. The Italian Ministry of Health projects Osservatorio Italiano per il monitoraggio dei disturbi dello spettro autistico (Fasc. 1S49) and I disturbi dello spettro autistico: attività previste dal decreto ministeriale del 30.12.2016 (Fasc. 2S57) granted the contribution of the Italian data. ; info:eu-repo/semantics/publishedVersion
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The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults-especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services. ; This study was funded by the European Parliament and managed by the European Union, DGSANTE [Ref.: SANCO/2014/C2/035]. The Italian Ministry of Health projects Osservatorio Italiano per il monitoraggio ...
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Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and postdiagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals. ; g This study was funded by the European Parliament and managed by the European Union, DGSANCO, [Ref.: SANCO/2014/ C2/035]. The Italian Ministry of Health projects 'Osservatorio Italiano per il monitoraggio dei disturbi dello spettro autistico' (Fasc. 1S49) and 'I disturbi dello spettro autistico: attività previste dal decreto ministeriale del 30.12.2016' (Fasc. 2S57) granted the contribution of the Italian data. ; info:eu-repo/semantics/publishedVersion
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In: Micai , M , Ciaramella , A , Salvitti , T , Fulceri , F , Fatta , L M , Poustka , L , Diehm , R , Iskrov , G , Stefanov , R , Guillon , Q , Rogé , B , Staines , A , Sweeney , M R , Boilson , A M , Leósdóttir , T , Saemundsen , E , Moilanen , I , Ebeling , H , Yliherva , A , Gissler , M , Parviainen , T , Tani , P , Kawa , R , Vicente , A , Rasga , C , Budişteanu , M , Dale , I , Povey , C , Flores , N , Jenaro , C , Monroy , M L , Primo , P G , Charman , T , Cramer , S , Warberg , C K , Canal-Bedia , R , Posada , M , Scattoni , M L & Schendel , D 2022 , ' Intervention Services for Autistic Adults : An ASDEU Study of Autistic Adults, Carers, and Professionals' Experiences ' , Journal of Autism and Developmental Disorders , vol. 52 , no. 4 , pp. 1623-1639 . https://doi.org/10.1007/s10803-021-05038-0
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated local services' use experiences of autistic adults, carers and professionals with interventions for autistic adults. The majority of the 697 participants experienced recommended considerations prior to deciding on intervention and during the intervention plan and implementation. Psychosocial interventions were the most commonly experienced interventions, while pharmacological interventions NOT recommended for core autistic symptoms were reported by fairly large proportions of participants. Family interventions were experienced slightly more commonly by carers than adults or professionals. Less than the 26% of autistic adult responders who had experienced challenging behaviors reported receiving an intervention to change them. These results provide insights for improving gaps in service provision of interventions among autistic adults.
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International audience ; Research providing an evidence-base for autistic adult services is sparse. The Autism Spectrum Disorders in the European Union (ASDEU) network implemented an on-line survey to determine gaps in autistic adult diagnostic evaluation and postdiagnostic support services. More than 55% in all groups experienced most of the recommended features for diagnostic evaluation for autistic adults. In contrast, < 2% of adults or carers, and < 21% of professionals experienced each of the recommended features for post-diagnostic support. In contrast to 61% of professionals, only about 30% of autistic adults and carers had knowledge of good local services models for autism diagnosis in adulthood. There are major differences between good practice guidelines for diagnostic and post-diagnostic care for autistic adults, and what is actually experienced by services users and professionals.
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In: Micai , M , Ciaramella , A , Salvitti , T , Fulceri , F , Fatta , L M , Poustka , L , Diehm , R , Iskrov , G , Stefanov , R , Guillon , Q , Rogé , B , Staines , A , Sweeney , M R , Boilson , A M , Leósdóttir , T , Saemundsen , E , Moilanen , I , Ebeling , H , Yliherva , A , Gissler , M , Parviainen , T , Tani , P , Kawa , R , Vicente , A , Rasga , C , Budişteanu , M , Dale , I , Povey , C , Flores , N , Jenaro , C , Monroy , M L , Primo , P G , Charman , T , Cramer , S , Warberg , C K , Canal-Bedia , R , Posada , M , Scattoni , M L & Schendel , D 2021 , ' Autistic Adult Health and Professional Perceptions of It : Evidence From the ASDEU Project ' , Frontiers in Psychiatry , vol. 12 , 614102 . https://doi.org/10.3389/fpsyt.2021.614102
The Autism Spectrum Disorders in the European Union (ASDEU) survey investigated the knowledge and health service experiences of users and providers to generate new hypotheses and scientific investigations that would contribute to improvement in health care for autistic adults. An online survey designed for autistic adults, carers of autistic adults, and professionals in adult services was translated into 11 languages and distributed electronically by organizations and in-country adult service facilities in 2017; 522 autistic adults, 442 carers, and 113 professionals provided answers to the health questions. Professionals, the majority in non-medical services, appeared to be poorly informed about whether certain co-occurring conditions were more frequent in autistic adults than typical adults—especially some medical conditions, suicide attempts, accidents, and pain. A minority of autistic adults reported preventive health behaviors such as routine health check-ups. The majority of users and providers expressed the desire to make health care services more user-friendly for autistic adults. Among the three groups, <20% of responders knew an organization or clinician which has developed a way to monitor health, and prevent poor health, that works well for adults on the autism spectrum. The results point to means for better management of co-occurring conditions associated with autism in adulthood in order to reduce hospital admissions and potential areas of improvement in health and social services for autistic adults. Specifically, efforts should be focused on (1) professionals' education on risks for co-occurring conditions in autistic adults; (2) promoting preventive health behaviors; (3) making services user-friendly for autistic adults and their families; and (4) encouraging knowledge of good local services.
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