A Look at the Latest Research on Subglottic Stenosis

by Nikki Kean •

Nikki Kean is a freelance medical writer based in New Jersey.

Integrating Crowdsourcing into Research: NoAAC

Investigators have realized that the study of rare disease is inherently limited by the restricted number of patients seen at any individual center. To recruit patients for a large prospective study comparing surgical approaches, Alexander Gelbard, MD, associate professor and co-director of the Complex Airway Reconstruction Program at The Vanderbilt Bill Wilkerson Center for Otolaryngology and Communication Sciences in Nashville and colleagues created a network of airway surgeons (the North American Airway Collaborative: NoAAC) drawn from 30 national and international institutions.

“Patients with iSGS are well educated and have formed online communities to share information about treatments and living with a chronic disease,” Dr. Gelbard said. Through the Living with Idiopathic Subglottic Stenosis Facebook page, developed by Catherine Andersen, a patient from Australia, NoAAC was able to recruit more than 1,000 patients in 16 months for the first prospective study comparing surgical techniques. “One surgeon alone would never have been able to recruit that many patients for a prospective study, so it was a great example of engaging with an online health community to rapidly recruit patients and improve our understanding of a rare disease,” he said.