1. Gelbard, A, Francis, DO, Sandulache, VC et al. Causes and consequences of adult laryngotracheal stenosis. Laryngoscope 2015; 125(5): 1137–1143.
Google Scholar | Crossref | Medline2. National Organization for Rare Disorders . Idiopathic Subglottic Stenosis NORD, https://rarediseases.org/rare-diseases/idiopathic-subglottic-stenosis (accessed 5 February 2021).
Google Scholar3. Yin, LX, Padula, WV, Gadkaree, S et al. Health care costs and cost-effectiveness in laryngotracheal stenosis. Otolaryngol Head Neck Surg 2019; 160(4): 679–686.
Google Scholar | SAGE Journals | ISI4. Bell, SA, Tudur Smith, C. A comparison of interventional clinical trials in rare versus non-rare diseases: an analysis ofClinicalTrials.gov. Orphanet J Rare Dis 2014; 9(1): 170.
Google Scholar | Crossref5. Kempf, L, Goldsmith, JC, Temple, R. Challenges of developing and conducting clinical trials in rare disorders. Am J Med Genet A 2018; 176(4): 773–783.
Google Scholar | Crossref | Medline6. DasMahapatra, P, Raja, P, Gilbert, J et al. Clinical trials from the patient perspective: survey in an online patient community. BMC Health Serv Res 2017; 17(1): 166.
Google Scholar | Crossref | Medline7. Slade, A, Isa, F, Kyte, D et al. Patient reported outcome measures in rare diseases: a narrative review. Orphanet J Rare Dis 2018; 13(1): 61.
Google Scholar | Crossref | Medline8. Bernard, GR, Harris, PA, Pulley, JM et al. A collaborative, academic approach to optimizing the national clinical research infrastructure: the first year of the Trial Innovation Network. J Clin Transl Sci 2018; 2(4): 187–192.
Google Scholar | Crossref | Medline9. Sedrak, MS, Sun, V, Liu, J et al. Physician perceptions of the use of social media for recruitment of patients in cancer clinical trials. JAMA Netw Open 2019; 2(9): e1911528.
Google Scholar | Crossref | Medline10. Gelbard, A, Anderson, C, Berry, LD et al. Comparative treatment outcomes for patients with idiopathic subglottic stenosis. JAMA Otolaryngol Head Neck Surg 2020; 146(1): 20–29.
Google Scholar | Crossref | Medline11. Wicks, P. Could digital patient communities be the launch pad for patient-centric trial design? Trials 2014; 15(1): 172.
Google Scholar | Crossref | Medline12. Hu, A. Reflections: the value of patient support groups. Otolaryngol Head Neck Surg 2017; 156(4): 587–588.
Google Scholar | SAGE Journals | ISI13. Haik, D, Kashanchi, K, Tajran, S et al. The online support group as a community: a thematic content analysis of an online support group for idiopathic subglottic stenosis. Ann Otol Rhinol Laryngol 2019; 128(4): 293–299.
Google Scholar | SAGE Journals | ISI14. Verma, SP, Goshtasbi, K, Berry, LD et al. Utilization and influence of online support communities in idiopathic subglottic stenosis patients. Laryngoscope 2021; 131(8): 1821–1827.
Google Scholar | Crossref | Medline15. Kao, CY, Aranda, S, Krishnasamy, M et al. Development and testing of a guideline document to provide essential information for patient decision making regarding cancer clinical trials. Eur J Cancer Care 2020; 29(5): e13236.
Google Scholar | Crossref | Medline16. Holm, KE, Casaburi, R, Cerreta, S et al. Patient involvement in the design of a patient-centered clinical trial to promote adherence to supplemental oxygen therapy in COPD. Patient 2016; 9(3): 271–279.
Google Scholar | Crossref | Medline17. Ma, G, Samad, I, Motz, K et al. Metabolic variations in normal and fibrotic human laryngotracheal-derived fibroblasts: a Warburg-like effect. Laryngoscope 2017; 127(3): E107–E113.
Google Scholar | Crossref | Medline18. Duvvuri, M, Motz, K, Murphy, M et al. Engineering an immunomodulatory drug-eluting stent to treat laryngotracheal stenosis. Biomater Sci 2019; 7(5): 1863–1874.
Google Scholar | Crossref | Medline19. McDonald, AM, Knight, RC, Campbell, MK et al. What influences recruitment to randomised controlled trials? A review of trials funded by two UK funding agencies. Trials 2006; 7: 9.
Google Scholar | Crossref | Medline | ISI20. Yung, KC, Chang, J, Courey, MS. A randomized controlled trial of adjuvant mitomycin-c in endoscopic surgery for laryngotracheal stenosis. Laryngoscope 2020; 130(3): 706–711.
Google Scholar | Crossref | Medline21. Hartnick, CJ, Hartley, BEJ, Lacy, PD et al. Topical mitomycin application after laryngotracheal reconstruction: a randomized, double-blind, placebo-controlled trial. Arch Otolaryngol Head Neck Surg 2001; 127(10): 1260–1264.
Google Scholar | Crossref | Medline22. Bounoua, L, Nigro, J, Zhang, P et al. Mapping urbanization in the United States from 2001 to 2011. Appl Geogr 2018; 90: 123–133.
Google Scholar | Crossref23. Greenberg, RG, Poole, L, Ford, DE et al. Response of the trial innovation network to the COVID-19 pandemic. J Clin Transl Sci 2021; 5(1): e100.
Google Scholar | Crossref | Medline24. Bangs, R, Crispino, T. From the other side: The patient perspective on cancer clinical trials. Urol Oncol 2019; 37(5): 331–335.
Google Scholar | Crossref | Medline25. Griggs, RC, Batshaw, M, Dunkle, M et al. Clinical research for rare disease: opportunities, challenges, and solutions. Mol Genet Metab 2009; 96(1): 20–26.
Google Scholar | Crossref | Medline | ISI26. Namba, DR, Ma, G, Samad, I et al. Rapamycin inhibits human laryngotracheal stenosis-derived fibroblast proliferation, metabolism, and function in vitro. Otolaryngol Head Neck Surg 2015; 152(5): 881–888.
Google Scholar | SAGE Journals | ISI27. Kaplan, B, Qazi, Y, Wellen, JR. Strategies for the management of adverse events associated with mTOR inhibitors. Transplant Rev 2014; 28(3): 126–133.
Google Scholar | Crossref | ISI28. Mathrudev, V, Goud, S, More, S et al. Impact of COVID-19 on oncology clinical trials: a “novel“ challenge. Cancer Res Stat Treat 2020; 3(5): 133–135.
Google Scholar | Crossref29. McDermott, MM, Newman, AB. Preserving clinical trial integrity during the coronavirus pandemic. JAMA 2020; 323(21): 2135–2136.
Google Scholar | Crossref | Medline