{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,5]],"date-time":"2026-10-05T04:21:35Z","timestamp":1791174095480,"version":"4.1.0"},"reference-count":43,"publisher":"Springer Science and Business Media LLC","issue":"S3","license":[{"start":{"date-parts":[[2014,7,17]],"date-time":"2014-07-17T00:00:00Z","timestamp":1405555200000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/www.springer.com\/tdm"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["J GEN INTERN MED"],"published-print":{"date-parts":[[2014,8]]},"DOI":"10.1007\/s11606-014-2925-7","type":"journal-article","created":{"date-parts":[[2014,7,16]],"date-time":"2014-07-16T15:40:07Z","timestamp":1405525207000},"page":"732-738","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":10,"title":["Use of State Administrative Data Sources to Study Adolescents and Young Adults with Rare Conditions"],"prefix":"10.1007","volume":"29","author":[{"given":"J. A.","family":"Royer","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. W.","family":"Hardin","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"S.","family":"McDermott","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"L.","family":"Ouyang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J. R.","family":"Mann","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"O. D.","family":"Ozturk","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"J.","family":"Bolen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2014,7,17]]},"reference":[{"key":"2925_CR1","unstructured":"Eurordis. The Voice of Rare Disease Patients in Europe. Available at: http:\/\/www.eurordis.org Accessed July 2, 2013"},{"key":"2925_CR2","doi-asserted-by":"crossref","first-page":"569","DOI":"10.1177\/0883073811420719","volume":"5","author":"L Ouyang","year":"2012","unstructured":"Ouyang L, Grosse SD, Fox MH, Bolen J. A national profile of health care and family impacts of children with muscular dystrophy and special health care needs in the United States. J Child Neurol. 2012;5:569\u201376.","journal-title":"J Child Neurol"},{"issue":"10","key":"2925_CR3","doi-asserted-by":"crossref","first-page":"918","DOI":"10.1111\/j.1365-2788.2010.01320.x","volume":"54","author":"L Ouyang","year":"2010","unstructured":"Ouyang L, Grosse S, Raspa M, Bailey D. Employment impact and financial burden for families of children with fragile X syndrome: findings from the National Fragile X Survey. J Intellect Disabil Res. 2010;54(10):918\u201328.","journal-title":"J Intellect Disabil Res"},{"key":"2925_CR4","doi-asserted-by":"crossref","first-page":"3","DOI":"10.1007\/978-90-481-9485-8_1","volume-title":"Rare Diseases Epidemiology","author":"SC Groft","year":"2010","unstructured":"Groft SC, De la Paz Posada M. Rare diseases\u2014avoiding misperceptions and establishing realities: the need for reliable epidemiological data. In: Groft SC, De la Paz Posada M, eds. Rare Diseases Epidemiology. Netherlands: Springer; 2010:3\u201314."},{"issue":"11","key":"2925_CR5","doi-asserted-by":"crossref","first-page":"793","DOI":"10.1002\/bdra.20279","volume":"76","author":"LA Miller","year":"2006","unstructured":"Miller LA, Romitti PA, Cunniff C, Druschel C, Mathews KD, Meaney FJ, Matthews D, Kantamneni J, Feng ZF, Zemblidge N, Miller TM, Andrews J, Fox D, Ciafaloni E, Pandya S, Montgomery A, Kenneson A. The muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology. Birth Defects Res A Clin Mol Teratol. 2006;76(11):793\u20137.","journal-title":"Birth Defects Res A Clin Mol Teratol"},{"key":"2925_CR6","doi-asserted-by":"crossref","first-page":"91","DOI":"10.1146\/annurev-publhealth-031210-100700","volume":"32","author":"DP Jutte","year":"2011","unstructured":"Jutte DP, Roos LL, Brownell MD. Administrative record linkage as a tool for public health research. Annu Rev Public Health. 2011;32:91\u2013108.","journal-title":"Annu Rev Public Health."},{"key":"2925_CR7","unstructured":"U.S. Census Bureau. South Carolina Quick Facts. Available at: http:\/\/quickfacts.census.gov\/qfd\/index.html Accessed July 2, 2013"},{"issue":"5","key":"2925_CR8","doi-asserted-by":"crossref","first-page":"359","DOI":"10.1097\/00125817-200109000-00006","volume":"3","author":"DC Crawford","year":"2001","unstructured":"Crawford DC, Acuna JM, Sherman SL. FMR1 and the fragile X syndrome: human genome epidemiology review. Genet Med. 2001;3(5):359\u201371.","journal-title":"Genet Med"},{"issue":"1","key":"2925_CR9","doi-asserted-by":"crossref","first-page":"16","DOI":"10.1352\/1944-7558-116.1.16","volume":"116","author":"SL Hartley","year":"2011","unstructured":"Hartley SL, Seltzer MM, Raspa M, Olmstead M, Bishop E, Bailey DB. Exploring the adult life of men and women with fragile X syndrome: results from a national survey. Am J Intellect Dev Disabil. 2011;116(1):16\u201335.","journal-title":"Am J Intellect Dev Disabil"},{"issue":"3","key":"2925_CR10","doi-asserted-by":"crossref","first-page":"114","DOI":"10.1159\/000056005","volume":"34","author":"RM Bowman","year":"2001","unstructured":"Bowman RM, McLone DG, Grant JA, Tomita T, Ito JA. Spina bifida outcome: a 25\u00a0year prospective. Pediatr Neurosurg. 2001;34(3):114\u201320.","journal-title":"Pediatr Neurosurg"},{"issue":"493","key":"2925_CR11","first-page":"632","volume":"53","author":"P Oakeshott","year":"2003","unstructured":"Oakeshott P, Hunt GM. Long-term outcome in open spina bifida. Br J Gen Pract. 2003;53(493):632\u20136.","journal-title":"Br J Gen Pract"},{"issue":"10","key":"2925_CR12","doi-asserted-by":"crossref","first-page":"1054","DOI":"10.1001\/archpedi.160.10.1054","volume":"160","author":"MJ Okumura","year":"2006","unstructured":"Okumura MJ, Campbell AD, Nasr SZ, Davis MM. Inpatient health care use among adult survivors of chronic childhood illnesses in the United States. Arch Pediatr Adolesc Med. 2006;160(10):1054\u201360.","journal-title":"Arch Pediatr Adolesc Med"},{"issue":"11","key":"2925_CR13","doi-asserted-by":"crossref","first-page":"921","DOI":"10.1080\/09638280802358282","volume":"31","author":"HA Barf","year":"2009","unstructured":"Barf HA, Post MW, Verhoef M, Jennekens-Schinkel A, Gooskens RH, Prevo AJ. Restrictions in social participation of young adults with spina bifida. Disabil Rehabil. 2009;31(11):921\u20137.","journal-title":"Disabil Rehabil"},{"issue":"4","key":"2925_CR14","doi-asserted-by":"crossref","first-page":"584","DOI":"10.1016\/j.jpeds.2010.04.004","volume":"157","author":"GS Liptak","year":"2010","unstructured":"Liptak GS, Kennedy JA, Dosa NP. Youth with spina bifida and transitions: health and social participation in a nationally represented sample. J Pediatr. 2010;157(4):584\u20138,588. e1. Epub 2010 May 20.","journal-title":"J Pediatr"},{"issue":"Suppl 1","key":"2925_CR15","first-page":"53","volume":"10","author":"M Verhoef","year":"2000","unstructured":"Verhoef M, Barf HA, Vroege JA, Post MW, van Asbeck FW, Gooskens RH, Prevo AJ. The ASPINE study: preliminary results on sex education, relationships and sexual functioning of Dutch adolescents with spina bifida. Eur J Pediatr Surg. 2000;10(Suppl 1):53\u20134.","journal-title":"Eur J Pediatr Surg"},{"issue":"1","key":"2925_CR16","doi-asserted-by":"crossref","first-page":"60","DOI":"10.1002\/ddrr.98","volume":"16","author":"SM Sawyer","year":"2010","unstructured":"Sawyer SM, Macnee S. Transition to adult health care for adolescents with spina bifida: research issues. Dev Disabil Res Rev. 2010;16(1):60\u20135.","journal-title":"Dev Disabil Res Rev"},{"issue":"9869","key":"2925_CR17","doi-asserted-by":"crossref","first-page":"845","DOI":"10.1016\/S0140-6736(12)61897-2","volume":"381","author":"E Mercuri","year":"2013","unstructured":"Mercuri E, Muntoni F. Muscular dystrophies. Lancet. 2013;381(9869):845\u201360.","journal-title":"Lancet"},{"issue":"5","key":"2925_CR18","doi-asserted-by":"crossref","first-page":"445","DOI":"10.1016\/j.nmd.2012.02.004","volume":"22","author":"D Abbott","year":"2012","unstructured":"Abbott D, Carpenter J, Bushby K. Transition to adulthood for young men with Duchenne muscular dystrophy: research from the UK. Neuromuscul Disord. 2012;22(5):445\u20136. Epub 2012 Mar 17.","journal-title":"Neuromuscul Disord"},{"issue":"1","key":"2925_CR19","doi-asserted-by":"crossref","first-page":"17","DOI":"10.1080\/13638490400010191","volume":"8","author":"J Rahbek","year":"2005","unstructured":"Rahbek J, Werge B, Madsen A, Marquardt J, Steffensen BF, Jeppesen J. Adult life with Duchenne muscular dystrophy: observations among an emerging and unforeseen patient population. Pediatr Rehabil. 2005;8(1):17\u201328.","journal-title":"Pediatr Rehabil"},{"key":"2925_CR20","unstructured":"South Carolina Department of Education. 2012\u20132013 Funding Manual: pages 6\u20137. Available at: http:\/\/ed.sc.gov\/agency\/cfo\/finance\/Fiscal-Systems\/documents\/2012-2013FundingManual.pdf Accessed July 2, 2013"},{"key":"2925_CR21","unstructured":"South Carolina Department of Disabilities and Special Needs. Available at: ddsn.sc.gov Accessed July 2, 2013"},{"key":"2925_CR22","unstructured":"South Carolina Department of Social Services. Available at dss.sc.gov Accessed July 2, 2013"},{"issue":"1","key":"2925_CR23","doi-asserted-by":"crossref","first-page":"316","DOI":"10.1007\/s10995-013-1236-7","volume":"18","author":"ES Hall","year":"2014","unstructured":"Hall ES, Goyal NK, Ammerman RT, Miller MM, Jones DE, Short JA, Van Ginkel JB. Development of a linked perinatal data resource from state administrative and community-based program data. Matern Child Health J. 2014;18(1):316\u2013325.","journal-title":"Matern Child Health J"},{"key":"2925_CR24","first-page":"27","volume-title":"Youth emancipating from foster care in California: Findings using linked administrative data. Center for Social Services Research","author":"B Needell","year":"2002","unstructured":"Needell B, Cuccaro-Alamin S, Brookhart A, Jackman W, Shlonsky A. Youth emancipating from foster care in California: Findings using linked administrative data. Center for Social Services Research. Berkeley: University of California; 2002:27\u201329."},{"issue":"2","key":"2925_CR25","first-page":"73","volume":"6","author":"P Sacco","year":"2013","unstructured":"Sacco P, Capkun-Niggli G, Zhang X. Jose R; The economic burden of fragile x syndrome: Healthcare resource utilization in the United States. Am Health Drug Benefits; 2013;6(2):73\u201383.","journal-title":"Am Health Drug Benefits"},{"key":"2925_CR26","doi-asserted-by":"crossref","first-page":"529","DOI":"10.1016\/j.apmr.2009.11.023","volume":"91","author":"BE Dicianno","year":"2010","unstructured":"Dicianno BE. Wilson R; Hospitalizaitons of adults with spina bifida and congenital spinal cord anomalies. Arch Phys Med Rehabil. 2010;91:529\u201335.","journal-title":"Arch Phys Med Rehabil"},{"issue":"RR13","key":"2925_CR27","first-page":"12","volume":"51","author":"RE Meyer","year":"2002","unstructured":"Meyer RE, Siega-Riz AM. Sociodemographic patterns in spina bifida birth prevalence trends: North Carolina 1995\u20131999. Centers for Disease Control: Morbidity and Mortality Weekly Report. 2002;51(RR13):12\u201315.","journal-title":"Centers for Disease Control: Morbidity and Mortality Weekly Report"},{"key":"2925_CR28","unstructured":"Ireys HT, Anderson G, Han C, Neff J. Cost of care for Medicaid-enrolled children with selected disabilities US Dept of Health & Human Services Office of Disability, Aging and Long-Term Care Policy. 1996; Available at http:\/\/aspe.hhs.gov\/daltcp\/reports\/carcstes.pdf."},{"key":"2925_CR29","doi-asserted-by":"crossref","first-page":"1066","DOI":"10.1097\/00005650-200411000-00005","volume":"11","author":"JW Peabody","year":"2004","unstructured":"Peabody JW, Luck J, Sharad J, Bertenthal D, Glassman P. Assessing the accuracy of administrative data in health information systems. Med Care. 2004;11:1066\u201370.","journal-title":"Med Care"},{"issue":"5Pt 2","key":"2925_CR30","doi-asserted-by":"crossref","first-page":"1620","DOI":"10.1111\/j.1475-6773.2005.00444.x","volume":"40","author":"KJ O\u2019Malley","year":"2005","unstructured":"O\u2019Malley KJ, Cook KF, Price MD, Raiford Wildes K, Hurdle JF, Ashton CM. Measuring diagnoses: ICD code accuracy. Health Serv Res. 2005;40(5Pt 2):1620\u20131639.","journal-title":"Health Serv Res"},{"issue":"6","key":"2925_CR31","doi-asserted-by":"crossref","first-page":"666","DOI":"10.1002\/pds.3243","volume":"21","author":"CT Fiske","year":"2012","unstructured":"Fiske CT, Griffin MR, Mitchel E, Sterling TR. Grijalva CG; Accuracy of pharmacy and coded-diagnosis information in identifying tuberculosis in patients with rheumatoid arthritis. Pharmacoepidemiology and Drug Safety; 2012;21(6):666\u2013669.","journal-title":"Pharmacoepidemiology and Drug Safety"},{"issue":"3","key":"2925_CR32","doi-asserted-by":"crossref","first-page":"193","DOI":"10.1007\/BF03404270","volume":"91","author":"SW Wen","year":"2000","unstructured":"Wen SW, Rouleau J, Lowry RB, Kinakin B, Anderson-Redick S, Sibbald B. Turner T; Congenital anomalies ascertained by two record systems run in parallel in the Canadian province of Alberta. Canadian Journal of Public Health; 2000;91(3):193\u2013196.","journal-title":"Canadian Journal of Public Health"},{"key":"2925_CR33","doi-asserted-by":"crossref","unstructured":"Kaye WE, Sanchez M, Wu J. Feasibility of creating a National ALS Registry using administrative data in the United States. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneraton, 2014; Early Online","DOI":"10.3109\/21678421.2014.887119"},{"issue":"5","key":"2925_CR34","doi-asserted-by":"crossref","first-page":"814","DOI":"10.1002\/mus.22195","volume":"44","author":"DE Stickler","year":"2011","unstructured":"Stickler DE, Royer JA, Hardin JW. Validity of hospital discharge data for identifying cases of amyotrophic lateral sclerosis. Muscle Nerve. 2011;44(5):814\u2013816.","journal-title":"Muscle Nerve"},{"key":"2925_CR35","doi-asserted-by":"crossref","unstructured":"McDermott S, Hardin JW, Royer JA, Mann JR, Tong, X, Ozturk OD, Ouyang L. Emergency Department Visits and Inpatient Hospitalizations for Adolescents and Young Adults with Fragile X Syndrome. Am. J. Intellect. Dev. Disabil. 2014, In press.","DOI":"10.1352\/1944-7558-120.3.230"},{"key":"2925_CR36","doi-asserted-by":"crossref","unstructured":"Ozturk OD, McDermott S, Mann JR, Hardin JW, Royer J, Ouyang L. Disparities in Health Care Utilization by Race among Teenagers and Young Adults with Muscular Dystrophy: Role of Socioeconomic Status. Manuscript under review, 2014.","DOI":"10.1097\/MLR.0000000000000194"},{"key":"2925_CR37","unstructured":"Tong X, McDermott S, Mann JR, Royer JR, Hardin JW, Ozturk O, Ouyang L. Co-morbid Conditions Associated with Adolescents and Young Adults with Fragile X Syndrome. Manuscript under review, 2014."},{"issue":"4","key":"2925_CR38","doi-asserted-by":"crossref","first-page":"503","DOI":"10.1016\/j.ajhg.2009.09.007","volume":"85","author":"B Coffee","year":"2009","unstructured":"Coffee B, Keith K, Albizua I, Malone T, Mowrey J, Sherman SL, Warren ST. Incidence of Fragile X Syndrome by Newborn Screening for Methylated FMR1 DNA. Am J Hum Genet. 2009;85(4):503\u2013514. doi: 10.1016\/j.ajhg.2009.09.007 .","journal-title":"Am J Hum Genet"},{"issue":"2","key":"2925_CR39","doi-asserted-by":"crossref","first-page":"169","DOI":"10.1016\/S0022-3476(06)80110-1","volume":"122","author":"JC Tarleton","year":"1993","unstructured":"Tarleton JC, Saul RA. Molecular Genetic Advances in Fragile X-Syndrome. J Pediatr. 1993;122(2):169\u2013185. doi: 10.1016\/S0022-3476(06)80110-1 .","journal-title":"J Pediatr"},{"issue":"1","key":"2925_CR40","doi-asserted-by":"crossref","first-page":"196","DOI":"10.1002\/(SICI)1096-8628(19960712)64:1<196::AID-AJMG35>3.0.CO;2-G","volume":"64","author":"G Turner","year":"1996","unstructured":"Turner G, Webb T, Wake S, Robinson H. Prevalence of fragile X syndrome. Am J Med Genet. 1996;64(1):196\u2013197.","journal-title":"Am J Med Genet"},{"issue":"12","key":"2925_CR41","doi-asserted-by":"crossref","first-page":"1008","DOI":"10.1002\/bdra.20735","volume":"88","author":"SE Parker","year":"2010","unstructured":"Parker SE, Mai CT, Canfield MA, Rickard R, Wang Y, Meyer RE, Anderson P, Mason CA, Collins JS, Kirby RS, Correa A. National Birth Defects Prevention Network. Updated National Birth Prevalence estimates for selected birth defects in the United States, 2004\u20132006. Birth Defects Res A Clin Mol Teratol. 2010;88(12):1008\u20131016.","journal-title":"Birth Defects Res A Clin Mol Teratol"},{"issue":"2","key":"2925_CR42","doi-asserted-by":"crossref","first-page":"274","DOI":"10.1542\/peds.2009-2084","volume":"126","author":"M Shin","year":"2010","unstructured":"Shin M, Besser LM, Siffel C, Kucik JE, Shaw GM, Lu C, Correa A, Congenital Anomaly Multistate Prevalence and Survival Collaborative. Prevalence of Spina Bifida Among Children and Adolescents in 10 Regions in the United States. Pediatrics. 2010;126(2):274\u201379.","journal-title":"Pediatrics"},{"issue":"40","key":"2925_CR43","first-page":"1119","volume":"58","author":"Centers for Disease Control and Prevention","year":"2009","unstructured":"Centers for Disease Control and Prevention. Prevalence of Duchenne\/Becker muscular dystrophy among males aged 5\u201324\u00a0years - four states, 2007. MMWR Morb Mortal Wkly Rep. Oct 16. 2009;58(40):1119\u20131122.","journal-title":"MMWR Morb Mortal Wkly Rep. Oct 16"}],"container-title":["Journal of General Internal Medicine"],"original-title":[],"language":"en","link":[{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s11606-014-2925-7.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/article\/10.1007\/s11606-014-2925-7\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"http:\/\/link.springer.com\/content\/pdf\/10.1007\/s11606-014-2925-7","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2022,4,11]],"date-time":"2022-04-11T06:50:39Z","timestamp":1649659839000},"score":1,"resource":{"primary":{"URL":"http:\/\/link.springer.com\/10.1007\/s11606-014-2925-7"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2014,7,17]]},"references-count":43,"journal-issue":{"issue":"S3","published-print":{"date-parts":[[2014,8]]}},"alternative-id":["2925"],"URL":"https:\/\/doi.org\/10.1007\/s11606-014-2925-7","relation":{},"ISSN":["0884-8734","1525-1497"],"issn-type":[{"value":"0884-8734","type":"print"},{"value":"1525-1497","type":"electronic"}],"subject":[],"published":{"date-parts":[[2014,7,17]]}}}