{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,27]],"date-time":"2026-02-27T04:24:37Z","timestamp":1772166277183,"version":"3.50.1"},"reference-count":20,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2023,5,20]],"date-time":"2023-05-20T00:00:00Z","timestamp":1684540800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,5,20]],"date-time":"2023-05-20T00:00:00Z","timestamp":1684540800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100012940","name":"Universit\u00e4tsklinikum T\u00fcbingen","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100012940","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Head Face Med"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Robin sequence (RS) is a congenital condition characterized by micrognathia, glossoptosis and upper airway obstruction. Diagnosis and treatment are characterized by heterogeneity, resulting in a lack of uniformly collected data.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We have set up a prospective, observational, multicenter, multinational registry aimed at obtaining routine clinical data from RS patients receiving different treatment approaches and enabling an assessment of outcomes obtained through different therapeutic approaches. Patient enrolment has started in January 2022. Disease characteristics, adverse events and complications depending on the different diagnostic and treatment approaches and their effects on neurocognition, growth, speech development and hearing outcome are evaluated using routine clinical data. In addition to characterizing the patient population and comparing outcomes achieved with different treatment approaches, the registry will evolve to focus on endpoints such as quality of life and long-term developmental status.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Discussion<\/jats:title>\n                    <jats:p>This registry will provide data on different treatment approaches collected during routine care with diverse framework conditions and will allow assessing diagnostic and therapeutic outcomes of children with RS. These data, urgently demanded by the scientific community, may contribute to refining and personalizing existing therapeutic approaches and increase knowledge about the long-term outcome of children born with this rare condition.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Trial registration<\/jats:title>\n                    <jats:p>DRKS00025365.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1186\/s13005-023-00364-3","type":"journal-article","created":{"date-parts":[[2023,5,20]],"date-time":"2023-05-20T01:01:55Z","timestamp":1684544515000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Study protocol for a multicenter, multinational, observational registry of epidemiology, treatment and outcome of patients with Robin sequence"],"prefix":"10.1186","volume":"19","author":[{"given":"Anna-Lisa","family":"Oechsle","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Cornelia","family":"Wiechers","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Veronique","family":"Abadie","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Francois","family":"Abel","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Corstiaan","family":"Breugem","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Christian F.","family":"Poets","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2023,5,20]]},"reference":[{"key":"364_CR1","doi-asserted-by":"publisher","first-page":"894","DOI":"10.1001\/jamapediatrics.2016.0796","volume":"170","author":"CC Breugem","year":"2016","unstructured":"Breugem CC, Evans KN, Poets CF, Suri S, Picard A, Filip C, et al. Best Practices for the diagnosis and evaluation of infants with Robin sequence: a clinical Consensus Report. JAMA Pediatr. 2016;170:894\u2013902. https:\/\/doi.org\/10.1001\/jamapediatrics.2016.0796.","journal-title":"JAMA Pediatr"},{"key":"364_CR2","doi-asserted-by":"publisher","first-page":"936","DOI":"10.1542\/peds.2010-2615","volume":"127","author":"KN Evans","year":"2011","unstructured":"Evans KN, Sie KC, Hopper RA, Glass RP, Hing AV, Cunningham ML. Robin sequence: from diagnosis to development of an effective management plan. Pediatrics. 2011;127:936\u201348. https:\/\/doi.org\/10.1542\/peds.2010-2615.","journal-title":"Pediatrics"},{"key":"364_CR3","doi-asserted-by":"publisher","first-page":"205","DOI":"10.1597\/1545-1569_1992_029_0205_tiotdo_2.3.co_2","volume":"29","author":"RJ Shprintzen","year":"1992","unstructured":"Shprintzen RJ. The implications of the diagnosis of Robin sequence. 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Informed consent will be obtained from all subjects involved in the study, but it is not applicable for this registry protocol.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}}],"article-number":"20"}}