Literature DB >> 29948533

Brief Report: A Survey of Autism Research Priorities Across a Diverse Community of Stakeholders.

Thomas W Frazier1, Geraldine Dawson2, Donna Murray3, Andy Shih4, Jessica Snyder Sachs5, Angela Geiger5.   

Abstract

Inclusion of stakeholder voices in the allocation of research funding can increase the relevance of results and improve community engagement in research. We describe the results of an online survey that gathered input from community stakeholders regarding autism research priorities. A demographically diverse sample of respondents (N = 6004; 79.1% female; 72.5% ages 30-59; 86.4% USA) completed the survey. Results indicated a preference for applied relative to basic science topics, though both basic and applied science areas were rated as important. Respondents gave their highest ratings to research focused on co-occurring conditions, health and well-being, adult transition, and lifespan issues. These results can guide decision-making by public and private funders when developing science funding priorities and engaging in science dissemination activities.

Entities:  

Keywords:  Adult transition; Autism; Caregivers; Funding; Research priorities; Stakeholders

Mesh:

Year:  2018        PMID: 29948533     DOI: 10.1007/s10803-018-3642-6

Source DB:  PubMed          Journal:  J Autism Dev Disord        ISSN: 0162-3257


  11 in total

Review 1.  Assessing the influence of researcher-partner involvement on the process and outcomes of participatory research in autism spectrum disorder and neurodevelopmental disorders: a scoping review.

Authors:  Jamil Jivraj; Lori-Ann Sacrey; Amanda Newton; David Nicholas; Lonnie Zwaigenbaum
Journal:  Autism       Date:  2014-07-02

2.  Editorial Perspective: Neurodiversity - a revolutionary concept for autism and psychiatry.

Authors:  Simon Baron-Cohen
Journal:  J Child Psychol Psychiatry       Date:  2017-06       Impact factor: 8.982

Review 3.  Advancing the understanding of autism disease mechanisms through genetics.

Authors:  Luis de la Torre-Ubieta; Hyejung Won; Jason L Stein; Daniel H Geschwind
Journal:  Nat Med       Date:  2016-04       Impact factor: 53.440

4.  What do parents of children with autism expect from participation in research? A community survey about early autism studies.

Authors:  Sue Fletcher-Watson; Kenneth Larsen; Erica Salomone
Journal:  Autism       Date:  2017-11-10

5.  Community-Partnered Research With Urban School Districts That Serve Children With Autism Spectrum Disorder.

Authors:  Tristram Smith; Suzannah Iadarola; David S Mandell; Robin Harwood; Connie Kasari
Journal:  Acad Pediatr       Date:  2017-04-25       Impact factor: 3.107

6.  Attitudes of the autism community to early autism research.

Authors:  Sue Fletcher-Watson; Fabio Apicella; Bonnie Auyeung; Stepanka Beranova; Frederique Bonnet-Brilhault; Ricardo Canal-Bedia; Tony Charman; Natasha Chericoni; Inês C Conceição; Kim Davies; Teresa Farroni; Marie Gomot; Emily Jones; Anett Kaale; Katarzyna Kapica; Rafal Kawa; Anneli Kylliäinen; Kenneth Larsen; Jeremy Lefort-Besnard; Joelle Malvy; Sara Manso de Dios; Silvana Markovska-Simoska; Inbal Millo; Natercia Miranda; Greg Pasco; Ewa Pisula; Marija Raleva; Bernadette Rogé; Erica Salomone; Synnve Schjolberg; Przemysław Tomalski; Astrid M Vicente; Nurit Yirmiya
Journal:  Autism       Date:  2016-03-14

7.  What should autism research focus upon? Community views and priorities from the United Kingdom.

Authors:  Elizabeth Pellicano; Adam Dinsmore; Tony Charman
Journal:  Autism       Date:  2014-04-30

8.  Database Resources of the National Center for Biotechnology Information.

Authors: 
Journal:  Nucleic Acids Res       Date:  2016-11-28       Impact factor: 16.971

9.  Views on researcher-community engagement in autism research in the United Kingdom: a mixed-methods study.

Authors:  Elizabeth Pellicano; Adam Dinsmore; Tony Charman
Journal:  PLoS One       Date:  2014-10-10       Impact factor: 3.240

Review 10.  At the cross-roads of participatory research and biomarker discovery in autism: the need for empirical data.

Authors:  Afiqah Yusuf; Mayada Elsabbagh
Journal:  BMC Med Ethics       Date:  2015-12-15       Impact factor: 2.652

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  13 in total

1.  Is the Autism Boom Headed for Medicaid? Patterns in the Enrollment of Autistic Adults in Wisconsin Medicaid, 2008-2018.

Authors:  Eric Rubenstein; Lauren Bishop
Journal:  Autism Res       Date:  2019-07-17       Impact factor: 5.216

Review 2.  Mental Health Services for Autistic Individuals Across the Lifespan: Recent Advances and Current Gaps.

Authors:  Brenna B Maddox; Kelsey S Dickson; Nicole A Stadnick; David S Mandell; Lauren Brookman-Frazee
Journal:  Curr Psychiatry Rep       Date:  2021-08-17       Impact factor: 5.285

3.  A Portfolio Analysis of Autism Research Funding in Australia, 2008-2017.

Authors:  Jacquiline den Houting; Elizabeth Pellicano
Journal:  J Autism Dev Disord       Date:  2019-11

4.  Factors Influencing the Use of Cognitive-Behavioral Therapy with Autistic Adults: A Survey of Community Mental Health Clinicians.

Authors:  Brenna B Maddox; Samantha R Crabbe; Jessica M Fishman; Rinad S Beidas; Lauren Brookman-Frazee; Judith S Miller; Christina Nicolaidis; David S Mandell
Journal:  J Autism Dev Disord       Date:  2019-11

Review 5.  Tackling healthcare access barriers for individuals with autism from diagnosis to adulthood.

Authors:  Natasha Malik-Soni; Andrew Shaker; Helen Luck; Anne E Mullin; Ryan E Wiley; M E Suzanne Lewis; Joaquin Fuentes; Thomas W Frazier
Journal:  Pediatr Res       Date:  2021-03-25       Impact factor: 3.953

Review 6.  Annual Research Review: Shifting from 'normal science' to neurodiversity in autism science.

Authors:  Elizabeth Pellicano; Jacquiline den Houting
Journal:  J Child Psychol Psychiatry       Date:  2021-11-03       Impact factor: 8.265

7.  #Bias: The Opportunities and Challenges of Surveys That Recruit and Collect Data of Autistic Adults Online.

Authors:  Eric Rubenstein; Sarah Furnier
Journal:  Autism Adulthood       Date:  2021-06-07

8.  Trends Over a Decade in NIH Funding for Autism Spectrum Disorder Services Research.

Authors:  Paige E Cervantes; Maya Matheis; Jasper Estabillo; Dana E M Seag; Katherine L Nelson; Robin Peth-Pierce; Kimberly Eaton Hoagwood; Sarah McCue Horwitz
Journal:  J Autism Dev Disord       Date:  2020-10-10

9.  Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond.

Authors:  Stephanie H Ameis; Meng-Chuan Lai; Benoit H Mulsant; Peter Szatmari
Journal:  Mol Autism       Date:  2020-07-22       Impact factor: 7.509

10.  An Exploratory Study of a Dimensional Assessment of the Diagnostic Criteria for Autism.

Authors:  Mark Brosnan
Journal:  J Autism Dev Disord       Date:  2020-11
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