Nontuberculous mycobacterium (NTM) causes a rare, chronic lung infection that has a marked impact on patient quality of life. Treatment options are limited, and consist of 18 to 24 months of multiple antibiotic therapies that carry a risk of serious side effects. NTM research has historically been underfunded, and at a recent NTM Research Retreat in Oregon, the NTM Research Consortium was founded. With increasing NTM disease awareness and subsequent formation of patient groups, we have the opportunity to bring together patients and researchers to drive meaningful, patient-centered research that improves patient care. Here, we propose to hold a one-day meeting with researchers and key patient stakeholders from NTM Info & Research (NTMir) and the COPD Foundation in addition to a six-member patient advisory panel. The primary objective is to develop a vision and mission for the NTMRC and define patient-centered research priorities for NTM research. The longer-term objective is to foster ongoing patient collaboration within the NTMRC.
The projected outputs from this project include defining a patient-centered mission and vision of NTMRC and defining key research priorities in the field of NTM infections and connect patients with researchers.
Project collaborators include a patient advisory panel; COPD Foundation; NTMir; CF Foundation; clinical experts; clinical and qualitative researchers; and epidemiologists.
More information about OHSU’s project can be found here.