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.
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.