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The Lancet Commission on the future of care and clinical research in autism

Lord, Catherine, Charman, Tony, Havdahl, Alexandra, Carbone, Paul, Anagnostou, Evdokia, Boyd, Brian, Carr, Themba, de Vries, Petrus J., Dissanayake, Cheryl, Divan, Gauri, Freitag, Christine M., Gotelli, Marina M., Kasari, Connie, Knapp, Martin ORCID: 0000-0003-1427-0215, Mundy, Peter, Plank, Alex, Scahill, Lawrence, Servili, Chiara, Shattuck, Paul, Simonoff, Emily, Singer, Alison Tepper, Slonims, Vicky, Wang, Paul P., Ysrraelit, Maria Celica, Jellett, Rachel, Pickles, Andrew, Cusack, James, Howlin, Patricia, Szatmari, Peter, Holbrook, Alison, Toolan, Christina and McCauley, James B. (2022) The Lancet Commission on the future of care and clinical research in autism. The Lancet, 399 (10321). pp. 271-334. ISSN 0140-6736

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Identification Number: 10.1016/S0140-6736(21)01541-5

Abstract

Affecting about 78 million people worldwide, autism is a condition of global importance because of its prevalence and the degree to which it can affect individuals and families. Autism awareness has grown monumentally in the past 20 years, yet most striking is that much more could be done to improve life outcomes for the highly heterogeneous group of people with autism. Such change will depend on investments in science focused on practical clinical issues, and on social and service systems that acknowledge the potential for change and growth as well as the varied, complex needs of the autistic individuals and their families whose lives could be changed with such an effort.

Item Type: Article
Additional Information: Funding Information: CL reports royalties from Western Psychological Services for diagnostic instruments; is on scientific advisory boards or projects for Tilray, Roche, Gateway, Springtide, and Greenwich Biosciences; and is supported by grants from the US National Institute of Mental Health (R01HD081199, R01MH115363, R01MH104423–02, and R01MH114925). TCh reports consultancy fees from Roche and Servier; royalties from Sage Publications and Guilford Publications; grants from the UK Medical Research Council (grants number MR/K021389/1 and MR/R011427/1), the UK National Institute for Health Research (grants number 13/119/18 and RP-PG-1211–20016), the EU Horizon 2020 programme (grant number 814302), Innovative Medicines Initiative (grant agreement number 777394 and AIMS-2-TRIALS, which receives support from the EU Horizon 2020 programme, European Federation of Pharmaceutical Industries and Associations, Autism Speaks, Autistica, and Simons Foundation Autism Research Initiative); and grant support from MQ Mental Health Research, The Waterloo Foundation, Epilepsy Research UK, the Charles Hawkins Fund, and the Baily Thomas Foundation. EA reports consulting fees from Roche and Quadrant; funding from Roche and SynapDx; non-financial support from AMO Pharma; book royalties from APPI and Springer; editorial board honoraria from Wiley; a patent (US20160000365A1) for an anxiety meter; is supported by the Ontario Brain Institute (POND network), Canadian Institutes of Health Research, Autism Intervention Research Network on Physical Health (funded by the Health Resources and Services Administration), US National Institutes of Health, Brain Canada, and the Azrieli Foundation; and is the Canada Research Chair in translational therapeutics in autism spectrum disorder and Dr Stuart D Sims endowed chair in Autism. BB is supported by US National Institute of Mental Health grant (1R01HD82127). AHa was supported by grants from the South-Eastern Norway Regional Health Authority (grant numbers 2018059 and 2020022) and by the Research Council of Norway (grants number 274611 and 288083). RJ reports funding from Australia's National Health and Medical Research Council. JC is supported by National Institute of Mental Health grants NIMH09902, NIMH081148, NIMH083707, NIMH80011, and U10MH66764. PC is supported by Simons Foundation Powering Autism Research and the Maternal and Child Health Bureau of the Leadership Education in Neurodevelopmental Disability. TCa reports personal fees from Western Psychological Services. LS reports being a consultant for Roche, Yamo, Teva, Impel, and Janssen Pharmaceuticals; book royalties from Oxford University Press, Guilford Press, and American Psychological Association Press; and licensing royalties for the Parent-Rated Anxiety Scale for Autism Spectrum Disorder from Cogstate and Yamo. PPW reports being employed by Clinical Research Associates, a non-profit organisation that is developing an experimental drug treatment for autism. CMF receives royalties for books on autism spectrum disorder, attention-deficit hyperactivity disorder, and major depressive disorder; grants for the A-FIPP randomised controlled trial (FR2069/8–1, 8-2), awarded by the German Research Foundation, and for the EU-AIMS2-TRIALS (H2020 777394) and EU STIPED (H2020 731827), awarded by the EU. CK is supported by grants from the Health Resources and Services Administration of the US Department of Health and Human Services (UA3MC11055), the US National Institutes of Health (R01HD098248, R01HD095973, P50DC018006), the US Department of Defense, and the Goldman Foundation (3104). APi receives questionnaire royalties from WPS. AHo reports personal fees from GW Pharmaceuticals. PSz receives research funding from the Canadian Institutes of Health Research and royalties from Guilford Press and Simon & Schuster for books. PSh reports support from the Health Resources and Services Administration of the US Department of Health and Human Services under the Autism Transitions Research Project (UJ2MC31073). VS is supported by the National Institute for Health Research (grant numbers EME 13/119/18, RP-PG-1211–20016, and 15/162) and a grant from Autistica (number 7262). GD reports grants from the UK Medical Research Council and Grand Challenges Canada, outside the submitted work. All other authors declare no competing interests. Funding Information: The work of the Commission and the Commission meetings were generously supported by the RD Foundation, the Progress Charitable Foundation, the Ruth and Edward Austin Foundation, the Muzinich Family Foundation, the UCLA Division of Child and Adolescent Psychiatry, and the UCLA Center for Autism Research and Treatment. We thank Autistica, Next for Autism, and Autism Speaks, for supporting the Los Angeles meeting and the international conference at Los Angeles, which were instrumental to this Commission. We are deeply thankful for the administrative support of Sandra Gaspar. We also acknowledge the role of Helen Frankish, the Lancet editor who provided important feedback through the process of developing the Commission. We thank the Norwegian Mother, Father and Child Cohort Study, supported by the Norwegian Ministry of Health and Care Services and the Ministry of Education and Research, for their generous permission to use their data in this publication. We are grateful to all the participating families in Norway who take part in this ongoing cohort study. The nested Autism Birth Cohort Study was supported by the National Institute of Neurological Disorders and Stroke (grant number U01 NS047537). We thank Laurie Hannigan at the Nic Waals Institute of Lovisenberg Diaconal Hospital (Oslo, Norway) for assisting with the data analyses in the Norwegian Mother, Father and Child Cohort Study with support from the South-Eastern Norway Regional Health Authority (grant number 2018058). The views, information, content, and conclusions herein are those of the authors and should not be construed as the official position or policy of, nor endorsed by, the US National Institute of Mental Health, the US Department of Health and Human Services, the US Government, or any other institutions with which the authors are affiliated.
Divisions: Personal Social Services Research Unit
Health Policy
Date Deposited: 31 Jan 2022 09:42
Last Modified: 08 Apr 2024 09:42
URI: http://eprints.lse.ac.uk/id/eprint/113576

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