In September of 2015, the Food and Drug Administration (FDA) convened a meeting on Nontuberculous Mycobacterial (NTM) lung disease. The meeting focus was on patients’ quality of life as it relates to the symptoms and treatment of NTM lung disease. Meeting attendees included patients, caregivers, patient advocates, healthcare professionals, patient advocacy organizations, and representatives from the pharmaceutical industry. The meeting allowed for the opportunity to hear directly from patients, caregivers, and patient advocates on their experiences with NTM and how it impacts their daily life. Although a successful meeting with various stakeholders in attendance, very little data exists in published scientific literature on the information discussed during the meeting.

The COPD Foundation and NTM Info & Research are working closely with Insmed to gather patient-reported data on NTM lung disease and the impact it has on patient lives. This data is being collected through an anonymous online survey. The goals of this survey are to capture and validate what patients expressed through testimony and audience surveys during the FDA meeting, present it to the scientific audience, and have it published in an effort to advance the knowledge about the significant impact that NTM lung disease has on patients’ lives. Once published, the findings will also be publicized on BronchandNTM360social and NTMInfo.org.

If you are interested in sharing your experience with NTM and how it impacts your life, please CLICK HERE.