{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,3]],"date-time":"2026-06-03T16:06:30Z","timestamp":1780502790168,"version":"3.54.1"},"reference-count":12,"publisher":"Elsevier BV","issue":"6","license":[{"start":{"date-parts":[[2022,12,1]],"date-time":"2022-12-01T00:00:00Z","timestamp":1669852800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/tdm\/userlicense\/1.0\/"},{"start":{"date-parts":[[2022,12,1]],"date-time":"2022-12-01T00:00:00Z","timestamp":1669852800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.elsevier.com\/legal\/tdmrep-license"}],"funder":[{"DOI":"10.13039\/501100004338","name":"Saint Joseph University","doi-asserted-by":"publisher","id":[{"id":"10.13039\/501100004338","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006458","name":"Children's Hospital of Philadelphia","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006458","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006510","name":"Duke University","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100006510","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100007707","name":"University of California, Davis","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100007707","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100011781","name":"Shriners Hospitals for Children","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100011781","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100019311","name":"Northwell Health","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100019311","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["clinicalkey.com","clinicalkey.com.au","clinicalkey.es","clinicalkey.fr","clinicalkey.jp","jpurol.com","elsevier.com","sciencedirect.com"],"crossmark-restriction":true},"short-container-title":["Journal of Pediatric Urology"],"published-print":{"date-parts":[[2022,12]]},"DOI":"10.1016\/j.jpurol.2022.06.014","type":"journal-article","created":{"date-parts":[[2022,6,17]],"date-time":"2022-06-17T11:43:44Z","timestamp":1655466224000},"page":"800.e1-800.e7","update-policy":"https:\/\/doi.org\/10.1016\/elsevier_cm_policy","source":"Crossref","is-referenced-by-count":16,"title":["Establishing the first community-centered Spina Bifida research agenda"],"prefix":"10.1016","volume":"18","author":[{"given":"Sara","family":"Struwe","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judy","family":"Thibadeau","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7733-8569","authenticated-orcid":false,"given":"Maryellen S.","family":"Kelly","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dawne","family":"Widener-Burrows","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"78","reference":[{"issue":"7","key":"10.1016\/j.jpurol.2022.06.014_bib1","doi-asserted-by":"crossref","first-page":"552","DOI":"10.1002\/bdra.20360","article-title":"Health care expenditures of children and adults with Spina Bifida in a privately insured US population","volume":"79","author":"Ouyang","year":"2007","journal-title":"Birt Defects Res A Clin Mol Teratol"},{"issue":"4","key":"10.1016\/j.jpurol.2022.06.014_bib2","doi-asserted-by":"crossref","first-page":"186","DOI":"10.1159\/000086559","article-title":"Long-term survival of individuals with myelomeningocele","volume":"41","author":"Davis","year":"2005","journal-title":"Pediatr Neurosurg"},{"issue":"2","key":"10.1016\/j.jpurol.2022.06.014_bib3","doi-asserted-by":"crossref","DOI":"10.1016\/j.dhjo.2019.100883","article-title":"Philosophy of care delivery for Spina Bifida","volume":"13","author":"Thibadeau","year":"2020","journal-title":"Disabil Health J"},{"issue":"3","key":"10.1016\/j.jpurol.2022.06.014_bib4","doi-asserted-by":"crossref","first-page":"431","DOI":"10.1016\/j.dhjo.2019.01.007","article-title":"Hospital and ED charges for Spina Bifida care in the United States between 2006 and 2014: over $2 billion annually","volume":"12","author":"Inouye","year":"2019","journal-title":"Disabil Health J"},{"issue":"3\u20134","key":"10.1016\/j.jpurol.2022.06.014_bib5","first-page":"257","article-title":"Crowdsourcing utility estimation for Spina Bifida in the general population","volume":"10","author":"Jiang","year":"2017","journal-title":"J Pediatr Rehabil Med"},{"issue":"3\u20134","key":"10.1016\/j.jpurol.2022.06.014_bib6","first-page":"335","article-title":"Bowel management and continence in adults with Spina\u00a0Bifida: results from the national Spina Bifida patient registry 2009-15","volume":"10","author":"Wiener","year":"2017","journal-title":"J Pediatr Rehabil Med"},{"issue":"3 Pt 2","key":"10.1016\/j.jpurol.2022.06.014_bib7","doi-asserted-by":"crossref","first-page":"885","DOI":"10.1016\/j.juro.2016.08.117","article-title":"All incontinence is not created equal: impact of urinary and fecal incontinence on quality of life in adults with Spina Bifida","volume":"197","author":"Szymanski","year":"2017","journal-title":"J Urol"},{"issue":"7","key":"10.1016\/j.jpurol.2022.06.014_bib8","doi-asserted-by":"crossref","first-page":"1627","DOI":"10.1007\/s10620-006-9249-3","article-title":"Impact of anal incontinence on psychosocial function and health-related quality of life","volume":"52","author":"Crowell","year":"2007","journal-title":"Dig Dis Sci"},{"issue":"2","key":"10.1016\/j.jpurol.2022.06.014_bib9","doi-asserted-by":"crossref","DOI":"10.1016\/j.dhjo.2019.06.005","article-title":"Scientific methodology of the development of the Guidelines for the care of people with Spina Bifida: an initiative of the Spina Bifida association","volume":"13","author":"Dicianno","year":"2020","journal-title":"Disabil Health J"},{"issue":"3","key":"10.1016\/j.jpurol.2022.06.014_bib10","doi-asserted-by":"crossref","DOI":"10.1542\/peds.2017-3730","article-title":"Surgeries and health outcomes among patients with Spina Bifida","volume":"142","author":"Alabi","year":"2018","journal-title":"Pediatrics"},{"key":"10.1016\/j.jpurol.2022.06.014_bib11","article-title":"Who is managing the bowels? A survey of clinical practice patterns in Spina Bifida clinics","volume":"30","author":"Kelly","year":"2021","journal-title":"J Pediatr Rehabil Med"},{"issue":"6","key":"10.1016\/j.jpurol.2022.06.014_bib12","first-page":"386","article-title":"Is community-based participatory research (CBPR) useful? A systematic review on papers in a decade","volume":"3","author":"Salimi","year":"2012","journal-title":"Int J Prev Med"}],"container-title":["Journal of Pediatric Urology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1477513122002819?httpAccept=text\/xml","content-type":"text\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/api.elsevier.com\/content\/article\/PII:S1477513122002819?httpAccept=text\/plain","content-type":"text\/plain","content-version":"vor","intended-application":"text-mining"}],"deposited":{"date-parts":[[2025,10,26]],"date-time":"2025-10-26T13:54:22Z","timestamp":1761486862000},"score":1,"resource":{"primary":{"URL":"https:\/\/linkinghub.elsevier.com\/retrieve\/pii\/S1477513122002819"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,12]]},"references-count":12,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2022,12]]}},"alternative-id":["S1477513122002819"],"URL":"https:\/\/doi.org\/10.1016\/j.jpurol.2022.06.014","relation":{},"ISSN":["1477-5131"],"issn-type":[{"value":"1477-5131","type":"print"}],"subject":[],"published":{"date-parts":[[2022,12]]},"assertion":[{"value":"Elsevier","name":"publisher","label":"This article is maintained by"},{"value":"Establishing the first community-centered Spina Bifida research agenda","name":"articletitle","label":"Article Title"},{"value":"Journal of Pediatric Urology","name":"journaltitle","label":"Journal Title"},{"value":"https:\/\/doi.org\/10.1016\/j.jpurol.2022.06.014","name":"articlelink","label":"CrossRef DOI link to publisher maintained version"},{"value":"article","name":"content_type","label":"Content Type"},{"value":"\u00a9 2022 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.","name":"copyright","label":"Copyright"}]}}