{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T10:07:41Z","timestamp":1777543661322,"version":"3.51.4"},"reference-count":29,"publisher":"SAGE Publications","issue":"2","license":[{"start":{"date-parts":[[2022,1,6]],"date-time":"2022-01-06T00:00:00Z","timestamp":1641427200000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/journals.sagepub.com\/page\/policies\/text-and-data-mining-license"}],"funder":[{"DOI":"10.13039\/100000050","name":"National Heart, Lung, and Blood Institute","doi-asserted-by":"publisher","award":["R01HL146401"],"award-info":[{"award-number":["R01HL146401"]}],"id":[{"id":"10.13039\/100000050","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000055","name":"National Institute on Deafness and Other Communication Disorders","doi-asserted-by":"publisher","award":["R01DC018567"],"award-info":[{"award-number":["R01DC018567"]}],"id":[{"id":"10.13039\/100000055","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000055","name":"National Institute on Deafness and Other Communication Disorders","doi-asserted-by":"publisher","award":["R21DC017225"],"award-info":[{"award-number":["R21DC017225"]}],"id":[{"id":"10.13039\/100000055","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100000055","name":"National Institute on Deafness and Other Communication Disorders","doi-asserted-by":"publisher","award":["T32DC000027"],"award-info":[{"award-number":["T32DC000027"]}],"id":[{"id":"10.13039\/100000055","id-type":"DOI","asserted-by":"publisher"}]},{"DOI":"10.13039\/100006108","name":"National Center for Advancing Translational Sciences","doi-asserted-by":"publisher","award":["U24TR001579"],"award-info":[{"award-number":["U24TR001579"]}],"id":[{"id":"10.13039\/100006108","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["journals.sagepub.com"],"crossmark-restriction":true},"short-container-title":["Clinical Trials"],"published-print":{"date-parts":[[2022,4]]},"abstract":"<jats:sec>\n                    <jats:title>Background\/Aims<\/jats:title>\n                    <jats:p>Laryngotracheal stenosis is a rare but devastating proximal airway fibrosis that restricts a patient\u2019s ability to breathe. Treatment is primarily surgical and to date, there has never been a multi-institutional, randomized, prospective, and interventional clinical trial for a medical therapy to treat laryngotracheal stenosis. Therefore, we aimed to obtain patient feedback to guide successful trial design, recruitment, retention, and for identifying potential barriers to study participation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Over 1000 members of an international laryngotracheal stenosis online support community (the Living with Idiopathic Subglottic Stenosis Facebook group) were sent two questionnaires for a proposed interventional double-blinded, randomized, placebo-controlled clinical trial.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>A total of 317 and 558 participants responded to the first and second surveys, respectively. The majority of participants (77%) were willing to consider enrollment, regardless of having a 50% chance of receiving placebo versus treatment (78%). The majority (84%) of participants were willing to travel 200\u2009miles to participate for up to six in-person visits over 50\u2009days. Specific side effects, including anemia\/thrombocytopenia (72%) or risk of infection (69.3%) had the greatest impact on clinical trial participation with other side effects (peripheral edema (53%), oral ulcers (51%), and gastrointestinal side effects (41%)) having less impact.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Patients with laryngotracheal stenosis possess nuanced insight into their disease and treatment options. As a group, they are extremely motivated for better therapies. Future laryngotracheal stenosis clinical trials should focus on providing excellent side effect -related education and utilizing feedback from online advocacy groups to optimize recruitment and retention.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1177\/17407745211065744","type":"journal-article","created":{"date-parts":[[2022,1,7]],"date-time":"2022-01-07T01:05:08Z","timestamp":1641517508000},"page":"194-200","update-policy":"https:\/\/doi.org\/10.1177\/sage-journals-update-policy","source":"Crossref","is-referenced-by-count":0,"title":["A survey of patients with laryngotracheal stenosis on future clinical trial design"],"prefix":"10.1177","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8619-7312","authenticated-orcid":false,"given":"Ioan","family":"Lina","sequence":"first","affiliation":[{"name":"Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Medical Institutions, Baltimore, MD, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexandra","family":"Berges","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Medical Institutions, Baltimore, MD, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Rafael","family":"Ospino","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Medical Institutions, Baltimore, MD, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Kevin","family":"Motz","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Medical Institutions, Baltimore, MD, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ruth","family":"Davis","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Medical Institutions, Baltimore, MD, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Anderson","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Medical Institutions, Baltimore, MD, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary","family":"Stroud","sequence":"additional","affiliation":[{"name":"Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Casey","family":"Rodweller","sequence":"additional","affiliation":[{"name":"Department of Medicine, Vanderbilt University Medical Center, Nashville, TN, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexander","family":"Gelbard","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology-Head and Neck Surgery, Vanderbilt University School of Medicine, Nashville, TN, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alexander T","family":"Hillel","sequence":"additional","affiliation":[{"name":"Department of Otolaryngology-Head and Neck Surgery, Johns Hopkins Medical Institutions, Baltimore, MD, USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"179","published-online":{"date-parts":[[2022,1,6]]},"reference":[{"key":"bibr1-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1002\/lary.24956"},{"key":"bibr2-17407745211065744","unstructured":"National Organization for Rare Disorders. Idiopathic Subglottic Stenosis NORD, https:\/\/rarediseases.org\/rare-diseases\/idiopathic-subglottic-stenosis (accessed 5 February 2021)."},{"key":"bibr3-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1177\/0194599818815068"},{"key":"bibr4-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-014-0170-0"},{"key":"bibr5-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1002\/ajmg.a.38413"},{"key":"bibr6-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-017-2090-x"},{"key":"bibr7-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-018-0810-x"},{"key":"bibr8-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1017\/cts.2018.319"},{"key":"bibr9-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1001\/jamanetworkopen.2019.11528"},{"key":"bibr10-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1001\/jamaoto.2019.3022"},{"key":"bibr11-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1186\/1745-6215-15-172"},{"key":"bibr12-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1177\/0194599817697030"},{"key":"bibr13-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1177\/0003489418820348"},{"key":"bibr14-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1002\/lary.29110"},{"key":"bibr15-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1111\/ecc.13236"},{"key":"bibr16-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1007\/s40271-015-0150-z"},{"key":"bibr17-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1002\/lary.26254"},{"key":"bibr18-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1039\/C8BM01623B"},{"key":"bibr19-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1186\/1745-6215-7-9"},{"key":"bibr20-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1002\/lary.28025"},{"key":"bibr21-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1001\/archotol.127.10.1260"},{"key":"bibr22-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1016\/j.apgeog.2017.12.002"},{"key":"bibr23-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1017\/cts.2021.782"},{"key":"bibr24-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1016\/j.urolonc.2018.01.003"},{"key":"bibr25-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1016\/j.ymgme.2008.10.003"},{"key":"bibr26-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1177\/0194599815573708"},{"key":"bibr27-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1016\/j.trre.2014.03.002"},{"key":"bibr28-17407745211065744","doi-asserted-by":"publisher","DOI":"10.4103\/CRST.CRST_146_20"},{"key":"bibr29-17407745211065744","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2020.4689"}],"container-title":["Clinical Trials"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/17407745211065744","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/full-xml\/10.1177\/17407745211065744","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/journals.sagepub.com\/doi\/pdf\/10.1177\/17407745211065744","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,4,28]],"date-time":"2026-04-28T17:28:02Z","timestamp":1777397282000},"score":1,"resource":{"primary":{"URL":"https:\/\/journals.sagepub.com\/doi\/10.1177\/17407745211065744"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2022,1,6]]},"references-count":29,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2022,4]]}},"alternative-id":["10.1177\/17407745211065744"],"URL":"https:\/\/doi.org\/10.1177\/17407745211065744","relation":{},"ISSN":["1740-7745","1740-7753"],"issn-type":[{"value":"1740-7745","type":"print"},{"value":"1740-7753","type":"electronic"}],"subject":[],"published":{"date-parts":[[2022,1,6]]}}}