Funded by the Patient-Centered Outcomes Research Institute (PCORI), the multi-institutional, multi-national North American Airway Collaborative (NoAAC) PR-02 study emphasized patient-reported outcomes (PRO) to develop evidence-based guidelines for treatment selection in idiopathic subglottic stenosis (iSGS). We developed an electronic data capture solution with customized features, including direct patient-partner entry of PRO data and extensive automated notifications to minimize the need for hands-on person-hours dedicated to managing and executing longitudinal patient follow-up.
As with the Lung Cancer Mutation Consortium, we remain the curator of the finalized datasets, which continue to be queried and have generated a number of secondary analysis papers (Kimura et al. 2021; Hoffman et al. 2021; Lee et al. 2021; Verma et al. 2020; Drake et al. 2020, Gelbard et al. 2018), in addition to the primary paper on comparative effectiveness of treatment options, which was published in JAMA Otolaryngology & Head & Neck Surgery (Gelbard et al. 2020).
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Drake VE, Gelbard A, Sobriera N, et al. Familial aggregation in idiopathic subglottic stenosis. Otolaryngol Head Neck Surg. 2020 Nov;163(5):1011-1017. doi:10.1177/0194599820935402. Epub 2020 Jun 30. PMID:32600122; PMCID:PMC7809487.
Gelbard A, Anderson C, Berry LD, et al. Comparative treatment outcomes for patients with idiopathic subglottic stenosis. JAMA Otolaryngol Head Neck Surg. 2020 Jan 1;146(1):20-29. doi: 10.1001/jamaoto.2019.3022. PMID:31670805; PMCID:PMC6824232.
Gelbard A, Shyr Y, Berry LD, et al. Treatment options in idiopathic subglottic stenosis: Protocol for a prospective international multicentre pragmatic trial. BMJ Open. 2018 Apr 10;8(4):e022243. doi:10.1136/bmjopen-2018-022243. PMID:29643170; PMCID:PMC5898326.
Hoffman MR, Patro A, Huang LC, et al. Impact of adjuvant medical therapies on surgical outcomes in idiopathic subglottic stenosis. Laryngoscope. 2021 Jun 12. doi:10.1002/lary.29675. Epub ahead of print. PMID:34117778.
Kimura K, Du L, Berry LD, et al. Modeling recurrence in idiopathic subglottic stenosis with mobile peak expiratory flow. Laryngoscope. 2021 Jul 26. doi:10.1002/lary.29760. Epub ahead of print. PMID:34309022.
Lee J, Huang LC, Berry LD, et al. Association of social determinants of health with time to diagnosis and treatment outcomes in idiopathic subglottic stenosis. Ann Otol Rhinol Laryngol. 2021 Oct;130(10):1116-1124. doi: 10.1177/0003489421995283. Epub 2021 Feb 25. PMID:33629608.
Verma SP, Goshtasbi K, Berry LD, Anderson C, Francis DO, Gelbard A. Utilization and influence of online support communities in idiopathic subglottic stenosis patients. Laryngoscope. 2021 Aug;131(8):1821-1827. doi: 10.1002/lary.29110. Epub 2020 Sep 29. PMID:32990358; PMCID:PMC8005507.