{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,17]],"date-time":"2026-08-17T14:27:30Z","timestamp":1786976850626,"version":"build-2736575974"},"reference-count":17,"publisher":"Wiley","issue":"6","license":[{"start":{"date-parts":[[2021,3,17]],"date-time":"2021-03-17T00:00:00Z","timestamp":1615939200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["American J of Med Genetics Pt A"],"published-print":{"date-parts":[[2021,6]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Specialty centers improve care for patients with Down syndrome. The cohort of adults with Down syndrome is increasing, but the capacity for specialty centers to meet their medical care needs is unknown. Electronic survey of staff of specialty clinics for adults with Down syndrome was conducted. Review of online clinic listings, and calculation of the number of adults with Down syndrome were performed. Analysis identified the percent of adults with Down syndrome who could have their medical care needs met in a current specialty clinic. Fourteen specialty clinics report providing care for 4038 adults with Down syndrome. Respondents reported gaps in care including: limitations of existing clinics, need for additional clinics, and knowledgeable health professionals in Down syndrome. Survey\u2010respondent clinic capacity would meet needs of 3% of adults with Down syndrome. Twenty\u2010five clinics for adults with Down syndrome were listed online with capacity to care for 6517 adults with Down syndrome meeting the needs of 5% of the population. Additional clinic capacity is needed to meet the needs of adults with Down syndrome. Survey of existing clinics provides guidance to create additional clinics, including: must\u2010have team members, current sources of clinic financial support, and gaps in current clinical care.<\/jats:p>","DOI":"10.1002\/ajmg.a.62169","type":"journal-article","created":{"date-parts":[[2021,3,17]],"date-time":"2021-03-17T08:50:19Z","timestamp":1615971019000},"page":"1767-1775","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":26,"title":["Specialty clinics for adults with Down syndrome: A clinic survey"],"prefix":"10.1002","volume":"185","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-4172-0288","authenticated-orcid":false,"given":"Stephanie L.","family":"Santoro","sequence":"first","affiliation":[{"name":"Division of Medical Genetics, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"},{"name":"Department of Pediatrics Harvard Medical School  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ashlee","family":"Campbell","sequence":"additional","affiliation":[{"name":"Division of Medical Genetics, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Archana","family":"Balasubramanian","sequence":"additional","affiliation":[{"name":"Department of Neurosciences University of California  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kelsey","family":"Haugen","sequence":"additional","affiliation":[{"name":"Division of Medical Genetics, Department of Pediatrics Massachusetts General Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kimberly","family":"Schafer","sequence":"additional","affiliation":[{"name":"Department of Neurosciences University of California  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William","family":"Mobley","sequence":"additional","affiliation":[{"name":"Department of Neurosciences University of California  San Diego California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,3,17]]},"reference":[{"issue":"5","key":"e_1_2_10_2_1","first-page":"e20180518","article-title":"Health supervision for children with Down syndrome","volume":"141","author":"AAP Publications Reaffirmed or Retired","year":"2018","journal-title":"Pediatrics"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2011-1605"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.61604"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.38512"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41436-020-00952-7"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.7326\/M20-4986"},{"key":"e_1_2_10_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2005.tb01111.x"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1038\/gim.2016.127"},{"key":"e_1_2_10_10_1","unstructured":"Down Syndrome Medical Care Centers. 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