{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,1]],"date-time":"2026-10-01T02:15:16Z","timestamp":1790820916380,"version":"4.1.0"},"reference-count":44,"publisher":"Elsevier BV","license":[{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"},{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-017"},{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-037"},{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-012"},{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-029"},{"start":{"date-parts":[[2022,10,1]],"date-time":"2022-10-01T00:00:00Z","timestamp":1664582400000},"content-version":"stm-asf","delay-in-days":0,"URL":"https:\/\/doi.org\/10.15223\/policy-004"}],"funder":[{"DOI":"10.13039\/100001545","name":"Children's Tumor Foundation","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100001545","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Psychiatric Research"],"published-print":{"date-parts":[[2022,10]]},"DOI":"10.1016\/j.jpsychires.2022.07.035","type":"journal-article","created":{"date-parts":[[2022,8,5]],"date-time":"2022-08-05T18:27:30Z","timestamp":1659724050000},"page":"268-277","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":6,"special_numbering":"C","title":["Understanding the Neurofibromatosis Type 1 (NF1) experience and the priorities of individuals with NF1 and their caregivers for cognitive and social-emotional research"],"prefix":"10.1016","volume":"154","author":[{"given":"Allison","family":"del Castillo","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marina","family":"Dekarchuk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tess","family":"Inker","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen","family":"Hussey","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9637-2164","authenticated-orcid":false,"given":"Karin S.","family":"Walsh","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"8","key":"10.1016\/j.jpsychires.2022.07.035_bib1","doi-asserted-by":"crossref","first-page":"553","DOI":"10.1017\/S0012162204000921","article-title":"Social skills of children with neurofibromatosis type 1","volume":"46","author":"Barton","year":"2004","journal-title":"Dev. Med. Child Neurol."},{"issue":"4","key":"10.1016\/j.jpsychires.2022.07.035_bib2","doi-asserted-by":"crossref","first-page":"401","DOI":"10.1111\/j.1365-2214.2006.00717.x","article-title":"The self-concept of children and adolescents with neurofibromatosis type 1","volume":"33","author":"Barton","year":"2006","journal-title":"Child Care Health Dev."},{"issue":"5","key":"10.1016\/j.jpsychires.2022.07.035_bib3","doi-asserted-by":"crossref","first-page":"1007","DOI":"10.1097\/j.pain.0000000000001486","article-title":"Towards a neurobiological understanding of pain in neurofibromatosis type 1 (NF1): mechanisms and implications for treatment","volume":"160","author":"Bellampalli","year":"2019","journal-title":"Pain"},{"issue":"7 Suppl. 1","key":"10.1016\/j.jpsychires.2022.07.035_bib4","first-page":"S15","article-title":"Perspective of adults with neurofibromatosis type 1 and cutaneous neurofibromas: implication for clinical trials","volume":"97","author":"Cannon","year":"2021","journal-title":"Neurology"},{"key":"10.1016\/j.jpsychires.2022.07.035_bib5","unstructured":"Children\u2019s Tumor Foundation, n.d. NF registry. https:\/\/www.ctf.org\/understanding-nf\/nf-registry#."},{"issue":"28","key":"10.1016\/j.jpsychires.2022.07.035_bib6","first-page":"1","article-title":"Models and frameworks of patient engagement in health services research: a scoping review protocol","volume":"4","author":"Chudyk","year":"2018","journal-title":"Research Involvement and Engagement"},{"issue":"5","key":"10.1016\/j.jpsychires.2022.07.035_bib7","doi-asserted-by":"crossref","first-page":"417","DOI":"10.1080\/09297041003761985","article-title":"Cognitive profile of children with neurofibromatosis and reading disabilities","volume":"16","author":"Cutting","year":"2010","journal-title":"Child Neuropsychol."},{"issue":"89","key":"10.1016\/j.jpsychires.2022.07.035_bib8","first-page":"1","article-title":"Patient engagement in research: a systemic review","volume":"14","author":"Domecq","year":"2014","journal-title":"BMC Health Serv. Res."},{"key":"10.1016\/j.jpsychires.2022.07.035_bib9","doi-asserted-by":"crossref","first-page":"1102","DOI":"10.1007\/s10897-018-0229-5","article-title":"Health survey of adults with neurofibromatosis 1 compared to population study controls","volume":"27","author":"Fjermestad","year":"2018","journal-title":"J. Genet. Counsel."},{"issue":"15","key":"10.1016\/j.jpsychires.2022.07.035_bib10","doi-asserted-by":"crossref","first-page":"1513","DOI":"10.1001\/jama.2014.11100","article-title":"The PCORI perspective on patient-centered outcomes research","volume":"312","author":"Frank","year":"2014","journal-title":"JAMA"},{"key":"10.1016\/j.jpsychires.2022.07.035_bib11","series-title":"Multidisciplinary Approach to Neurofibromatosis Type 1","first-page":"207","article-title":"Learning disabilities and behaviour in neurofibromatosis type 1 patients","author":"Garg","year":"2020"},{"issue":"17004","key":"10.1016\/j.jpsychires.2022.07.035_bib12","first-page":"1","article-title":"Neurofibromatosis type 1","volume":"3","author":"Gutmann","year":"2017","journal-title":"Nat. Rev. Dis. Prim."},{"issue":"12","key":"10.1016\/j.jpsychires.2022.07.035_bib13","doi-asserted-by":"crossref","first-page":"1078","DOI":"10.1177\/08830738211038083","article-title":"Computerized working memory training for children with neurofibromatosis type 1 (NF1): a pilot study","volume":"36","author":"Hardy","year":"2021","journal-title":"J. Child Neurol."},{"issue":"3","key":"10.1016\/j.jpsychires.2022.07.035_bib14","doi-asserted-by":"crossref","first-page":"430","DOI":"10.1007\/s10519-010-9430-5","article-title":"Does cognitive impairment explain behavioral and social problems of children with neurofibromatosis type 1?","volume":"41","author":"Huijbregts","year":"2011","journal-title":"Behav. Genet."},{"issue":"7","key":"10.1016\/j.jpsychires.2022.07.035_bib15","doi-asserted-by":"crossref","first-page":"1037","DOI":"10.1212\/01.wnl.0000179303.72345.ce","article-title":"The nature and frequency of cognitive deficits in children with neurofibromatosis type 1","volume":"65","author":"Hyman","year":"2005","journal-title":"Neurology"},{"key":"10.1016\/j.jpsychires.2022.07.035_bib16","first-page":"973","article-title":"Learning disabilities in children with neurofibromatosis type 1: subtypes, cognitive profile, and attention-deficit-hyperactivity disorder","volume":"48","author":"Hyman","year":"2006","journal-title":"Dev. Med. Child Neurol."},{"issue":"4","key":"10.1016\/j.jpsychires.2022.07.035_bib17","doi-asserted-by":"crossref","first-page":"237","DOI":"10.1017\/S0012162205000460","article-title":"Psychological disturbance and sleep disorders in children with neurofibromatosis type 1","volume":"47","author":"Johnson","year":"2005","journal-title":"Dev. Med. Child Neurol."},{"issue":"1","key":"10.1016\/j.jpsychires.2022.07.035_bib18","doi-asserted-by":"crossref","first-page":"53","DOI":"10.4065\/mcp.2009.0248","article-title":"Patient participation: current knowledge and applicability to patient safety","volume":"85","author":"Longtin","year":"2010","journal-title":"Mayo Clin. Proc."},{"issue":"4","key":"10.1016\/j.jpsychires.2022.07.035_bib19","doi-asserted-by":"crossref","first-page":"660","DOI":"10.1016\/j.jpeds.2010.10.001","article-title":"Mental, motor, and language development of toddlers with neurofibromatosis type 1","volume":"158","author":"Lorenzo","year":"2011","journal-title":"J. Pediatr."},{"issue":"4","key":"10.1016\/j.jpsychires.2022.07.035_bib20","doi-asserted-by":"crossref","first-page":"1006","DOI":"10.1016\/j.jpeds.2014.12.012","article-title":"Developmental trajectories of young children with neurofibromatosis type 1: a longitudinal study from 21 to 40 months of age","volume":"166","author":"Lorenzo","year":"2015","journal-title":"J. Pediatr."},{"issue":"1","key":"10.1016\/j.jpsychires.2022.07.035_bib21","doi-asserted-by":"crossref","first-page":"10","DOI":"10.1016\/j.cct.2010.10.004","article-title":"Experiences of families with a child, adolescent, or young adult with neurofibromatosis type 1 and plexiform neurofibroma evaluated for clinical trials participation at the National Cancer Institute","volume":"32","author":"Martin","year":"2011","journal-title":"Contemp. Clin. Trials"},{"issue":"7","key":"10.1016\/j.jpsychires.2022.07.035_bib22","doi-asserted-by":"crossref","first-page":"13","DOI":"10.1093\/jpepsy\/jsr124","article-title":"Social-emotional functioning of children and adolescents with neurofibromatosis type 1 and plexiform neurofibromas: relationships with cognitive, disease, and environmental variables","volume":"37","author":"Martin","year":"2012","journal-title":"J. Pediatr. Psychol."},{"issue":"5","key":"10.1016\/j.jpsychires.2022.07.035_bib23","doi-asserted-by":"crossref","first-page":"796","DOI":"10.1007\/s10897-014-9688-5","article-title":"Attitudes about internet support groups among adolescents and young adults with neurofibromatosis type 1 and their parents","volume":"23","author":"Martin","year":"2014","journal-title":"J. Genet. Counsel."},{"issue":"7 Suppl. 1","key":"10.1016\/j.jpsychires.2022.07.035_bib24","first-page":"S4","article-title":"Enhancing neurofibromatosis clinical trial outcome measures through patient engagement: lessons from REiNS","volume":"97","author":"Merker","year":"2021","journal-title":"Neurology"},{"key":"10.1016\/j.jpsychires.2022.07.035_bib25","doi-asserted-by":"crossref","first-page":"368","DOI":"10.1177\/088307389400900406","article-title":"Neuropsychological profile of children with neurofibromatosis, brain tumor, or both","volume":"9","author":"Moore","year":"1994","journal-title":"J. Child Neurol."},{"key":"10.1016\/j.jpsychires.2022.07.035_bib26","series-title":"REiNS International Collaboration","year":"2020"},{"issue":"7","key":"10.1016\/j.jpsychires.2022.07.035_bib28","doi-asserted-by":"crossref","first-page":"869","DOI":"10.1002\/ajmg.b.32095","article-title":"Detecting anxiety symptoms in children and youths with neurofibromatosis type 1","volume":"159B","author":"Pasini","year":"2012","journal-title":"Am. J. Med. Genet. B"},{"key":"10.1016\/j.jpsychires.2022.07.035_bib29","doi-asserted-by":"crossref","first-page":"313","DOI":"10.1080\/09297049.2010.542746","article-title":"Assessment of executive function and attention in children with neurofibromatosis type 1: relationships between cognitive measures and real-world behavior","volume":"17","author":"Payne","year":"2011","journal-title":"Child Neuropsychol."},{"issue":"3","key":"10.1016\/j.jpsychires.2022.07.035_bib30","doi-asserted-by":"crossref","first-page":"661","DOI":"10.1002\/ajmg.a.36338","article-title":"Longitudinal assessment of cognition and T2-hyperintensities in NF1: an 18-year study","volume":"164A","author":"Payne","year":"2013","journal-title":"Am. J. Med. Genet."},{"issue":"24","key":"10.1016\/j.jpsychires.2022.07.035_bib31","doi-asserted-by":"crossref","first-page":"2575","DOI":"10.1212\/WNL.0000000000003435","article-title":"Randomized placebo-controlled study of lovastatin in children with neurofibromatosis type 1","volume":"87","author":"Payne","year":"2016","journal-title":"Neurology"},{"issue":"4","key":"10.1016\/j.jpsychires.2022.07.035_bib32","doi-asserted-by":"crossref","first-page":"439","DOI":"10.1037\/neu0000262","article-title":"Theory of mind in children with neurofibromatosis type 1","volume":"30","author":"Payne","year":"2016","journal-title":"Neuropsychology"},{"issue":"8","key":"10.1016\/j.jpsychires.2022.07.035_bib33","doi-asserted-by":"crossref","first-page":"1177","DOI":"10.1177\/1087054719894384","article-title":"Cognition, ADHD symptoms, and functional impairment in children and adolescents with Neurofibromatosis Type 1","volume":"25","author":"Payne","year":"2021","journal-title":"J. Atten. Disord."},{"issue":"7","key":"10.1016\/j.jpsychires.2022.07.035_bib34","doi-asserted-by":"crossref","first-page":"590","DOI":"10.1080\/87565641.2012.695831","article-title":"The impact of ADHD on the cognitive and academic functioning of children with NF1","volume":"37","author":"Pride","year":"2012","journal-title":"Dev. Neuropsychol."},{"issue":"1","key":"10.1016\/j.jpsychires.2022.07.035_bib36","doi-asserted-by":"crossref","first-page":"8","DOI":"10.1016\/S2215-0366(16)30348-0","article-title":"Sex and gender differences in mental disorders","volume":"4","author":"Riecher-R\u00f6ssler","year":"2017","journal-title":"Lancet Psychiatr."},{"issue":"9","key":"10.1016\/j.jpsychires.2022.07.035_bib37","doi-asserted-by":"crossref","first-page":"2373","DOI":"10.1002\/ajmg.a.38323","article-title":"Development of emotional and behavioral problems in neurofibromatosis type 1 during young childhood","volume":"173","author":"Rietman","year":"2017","journal-title":"Am. J. Med. Genet."},{"issue":"3","key":"10.1016\/j.jpsychires.2022.07.035_bib38","doi-asserted-by":"crossref","first-page":"319","DOI":"10.1002\/ajmg.b.32612","article-title":"Emotional and behavioral problems in children and adolescents with neurofibromatosis type 1","volume":"177","author":"Rietman","year":"2017","journal-title":"Am. J. Med. Genet. Part B Neuropsychiatric Genetics"},{"key":"10.1016\/j.jpsychires.2022.07.035_bib39","doi-asserted-by":"crossref","first-page":"920","DOI":"10.1016\/j.socscimed.2009.07.005","article-title":"Patient involvement in health research: a contribution to a systematic review on the effectiveness of treatments for degenerative ataxias","volume":"69","author":"Serrano-Aguilar","year":"2009","journal-title":"Soc. Sci. Med."},{"key":"10.1016\/j.jpsychires.2022.07.035_bib40","article-title":"The association of executive functioning with academic, behavior, and social performance ratings in children with ADHD","author":"Tamm","year":"2020","journal-title":"J. Learn. Disabil."},{"key":"10.1016\/j.jpsychires.2022.07.035_bib41","series-title":"Enhancing FDA's Approach to Patient Engagement: Current State Analysis and Recommendations","year":"2017"},{"key":"10.1016\/j.jpsychires.2022.07.035_bib42","series-title":"About the FDA Patient Representative Program","year":"2018"},{"key":"10.1016\/j.jpsychires.2022.07.035_bib43","series-title":"Learn about FDA Patient Engagement","year":"2020"},{"issue":"1","key":"10.1016\/j.jpsychires.2022.07.035_bib44","doi-asserted-by":"crossref","first-page":"1","DOI":"10.5812\/ircmj.12454","article-title":"Patient involvement in health care decision making: a review","volume":"16","author":"Vahdat","year":"2014","journal-title":"Iran. Red Crescent Med. J."},{"issue":"9","key":"10.1016\/j.jpsychires.2022.07.035_bib45","doi-asserted-by":"crossref","first-page":"2103","DOI":"10.1002\/ajmg.a.37123","article-title":"Pain interference in youth with neurofibromatosis type 1 and plexiform neurofibromas and relation to disease severity, social-emotional functioning, and quality of life","volume":"167","author":"Wolters","year":"2015","journal-title":"Am. J. Med. Genet."},{"key":"10.1016\/j.jpsychires.2022.07.035_bib46","doi-asserted-by":"crossref","first-page":"53","DOI":"10.1016\/j.pscychresns.2017.06.003","article-title":"Computerized cognitive training for children with neurofibromatosis type 1: a pilot resting-state fMRI study","volume":"266","author":"Yoncheva","year":"2017","journal-title":"Psychiatry Res. Neuroimaging."}],"container-title":["Journal of Psychiatric Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0022395622004113?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S0022395622004113?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,9,20]],"date-time":"2025-09-20T11:32:18Z","timestamp":1758367938000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S0022395622004113"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,10]]},"references-count":44,"alternative-id":["S0022395622004113"],"URL":"https:\/\/doi.org\/10.1016\/j.jpsychires.2022.07.035","relation":{},"ISSN":["0022-3956"],"issn-type":[{"value":"0022-3956","type":"print"}],"subject":[],"published":{"date-parts":[[2022,10]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Understanding the Neurofibromatosis Type 1 (NF1) experience and the priorities of individuals with NF1 and their caregivers for cognitive and social-emotional research","name":"articletitle","label":"Article Title"},{"value":"Journal of Psychiatric Research","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jpsychires.2022.07.035","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2022 Published by Elsevier Ltd.","name":"copyright","label":"Copyright"}]}}