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Improving Outcomes for NTM Patients.
Through collaboration, multi-site studies, and scientific exchange, the NTMRC advances knowledge and treatment of NTM disease.
About the Consortium
The NTM Research Consortium was established to create a collaborative network of experts committed to advancing research on NTM disease.
By connecting institutions, clinicians, and investigators across multiple sites, the consortium enables coordinated studies, knowledge sharing, and the development of new therapeutic strategies.
Our work supports clinical research, fosters collaboration with industry and regulatory partners, and helps accelerate scientific progress in a field where improved treatments and patient outcomes are urgently needed.
The consortium supports a wide range of research initiatives focused on understanding and improving care for individuals affected by NTM disease.
- Multi-site clinical research studies
- Collaborative research networks across leading institutions
- Industry and regulatory partnerships
Patient Stories
Oh, would I could describe these conceptions, could impress upon paper all that is living so full and warm within me, that it might be the mirror of my soul.
Melisa Utabe
Web designer, NYC
Oh, would I could describe these conceptions, could impress upon paper all that is living so full and warm within me, that it might be the mirror of my soul.
Melisa Utabe
Web designer, NYC
Oh, would I could describe these conceptions, could impress upon paper all that is living so full and warm within me, that it might be the mirror of my soul.
Melisa Utabe
Web designer, NYC
How We Advance NTM Research
Connecting experts, institutions, and industry partners to accelerate research, improve treatments, and advance patient care through collaborative science.
01
Multi-Site Collaboration
Leading research institutions work together to share expertise, align priorities, and build a stronger network dedicated to advancing NTM research.
02
Study Development
Investigators identify critical research questions and design high-quality clinical studies that address unmet needs in NTM care.
03
Clinical Research
Participating sites conduct collaborative clinical studies while collecting reliable data that helps improve understanding of NTM disease.
04
Scientific Impact
Research findings support new therapeutic strategies, inform clinical practice, and accelerate the development of better treatments for patients.
upcoming events & training
NOV
05
Ongoing studies
A Randomized, Double-Blind, Placebo-Controlled, Multicenter, Prospective, Investigator-Initiated Trial to Assess the Efficacy, Safety, and Pharmacokinetics of Epetraborole in Patients with Mycobacterium abscessus Lung Disease: REBOUND Study
- PI: Kevin Winthrop, MD, MPH
- Funder: AN2 Therapeutics, Inc.
- Project Summary: The study is a multi-site, double-blind, randomized, placebo-controlled, parallel-group, multicenter, prospective, investigator-initiated trial designed to evaluate epetraborole (EBO) monotherapy for the treatment of Mycobacterium abscessus complex (MABc) lung disease. Primary outcome is clinical response (symptom improvement).
- Clinicaltrials.gov link: https://clinicaltrials.gov/study/NCT07301320
CRISPR detection of circulating cell-free Mycobacterium avium complex (MAC) DNA for rapid diagnosis and monitoring of MAC pulmonary disease (CRISPR)
- PIs: Kevin Winthrop, MD, MPH & Bo Ning, PhD
- Funder: NIH/NIAID
- Project Summary: The study is a multi-site, observational study designed to validate the detection of MAC cell-free DNA (cfDNA) from blood samples of patients with MAC pulmonary disease using a retrospective cohort, and to monitor disease during treatment using longitudinal samples using a prospective cohort. Primary outcome is change from MAC-cfDNA positive to negative from baseline to 12 months.
- RePORTER link: https://reporter.nih.gov/search/gejk6PoNaUiqgzX9NNlljA/project-details/10882269
Mycobacterium avium complex pulmonary infection: immunologic and transcriptomic signatures of disease and treatment response (IMMTR)
- PIs: Kevin Winthrop, MD, MPH; David Lewinsohn, MD , PhD; & Shannon McWeeney, PhD
- Funder: NIH/NIAID
- Project Summary: The study is a multi-site, observational, prospective study which utilizes a sub-population of the CRSIPR Study. IMMTR is a longitudinal study designed to characterize immune profiles of disease throughout the duration of guideline treatment for MAC pulmonary disease, with the goal of defining disease signatures and biomarkers predictive of treatment response.
- RePORTER link: https://reporter.nih.gov/search/qkZj_NR2E0-0hxz8rfJUaw/project-details/11174964
Patient reported outcomes in patients with nontuberculous mycobacterial pulmonary disease (NTM PRO cohort)
- PI: Emily Henkle, PhD, MPH
- Funder: NIH/NHLBI
- Project Summary: Patient-reported outcome (PRO) measures are a patient- centered way to measure symptoms, functioning, and symptomatic adverse events over time. The study is a multi-site, observational study designed to understand the trajectory of symptoms and their association with NTM pulmonary disease activity, response, and recurrence after treatment completion.
- RePORTER link: https://reporter.nih.gov/project-details/11166697
Phase 2 Study of the Efficacy and Safety of ORC-13661 for the Prevention of Drug-Induced Hearing Loss in Patients Receiving Intravenous Amikacin Therapy for Non-Tuberculous Mycobacterium Disease (SOUNDS)
- Principal Investigators: Kevin Winthrop, MD, MPH and Edwin Rubel, PhD
- Funder: National Institute on Deafness and Other Communication Disorders (NIDCD)/National Institutes of Health (NIH)
- Overview: The goal of this clinical trial is to test the effectiveness of the study drug, ORC-13361, in preventing hearing loss in patients with NTM infection who are undergoing treatment with IV amikacin therapy. The main questions this study aims to answer are: Is ORC-13661 effective for preventing or lessening hearing loss induced by amikacin treatment? And Is ORC-13661 effective for preventing or lessening other measures of hearing impairment?
- Participating Sites: Oregon Health & Science University, University of Texas at Tyler, Mayo Clinic Rochester, National Jewish Health, Medical University of South Carolina, University of California San Francisco, Johns Hopkins University, Northwell Health, Stanford University
- Clinicaltrials.gov link: https://clinicaltrials.gov/study/NCT05730283
Hypertonic Saline for Treatment of Pulmonary Mycobacterium Avium Complex (MAC) Disease
- PI: Kevin Winthrop, MD, MPH
- Funder: Nontuberculous Mycobacteria Info & Research (NTMir)
- Project Summary: The study is a open label, randomized control trial testing whether hypertonic saline helps improve symptoms and clearance of mycobacteria in patients with MAC lung infections. Primary outcome is AFB culture conversion.
- Clinicaltrials.gov link: https://clinicaltrials.gov/study/NCT04921943
Mycobacterium Avium Complex Core
- PI: Cara Varley, MD, MPH
- Funder: National Heart, Lung, and Blood Institute: K23 HL161495
- Project Summary: Researchers at Oregon Health & Science University have designed a study to identify the most important outcome measurement instruments for Mycobacterium avium complex (MAC) pulmonary disease research. Our goal is to get opinions about potential measurement instruments from many types of people involved with MAC-PD, and for the group to come to an agreement about which measurement instruments should be used. The research team hopes the results of this study will help patients deal with pulmonary MAC disease in the short-term and long-term. The study is currently enrolling.
- To participate in this study, see here: Links to participate can be found here: https://ohsu-psu-sph.org/research/cids/research-projects/ https://redcap.link/maccor
A Randomized, Double-Blind, Placebo-Controlled, Multicenter, Prospective, Investigator-Initiated Trial to Assess the Efficacy, Safety, and Pharmacokinetics of Epetraborole in Patients with Mycobacterium abscessus Lung Disease: REBOUND Study
- PI: Kevin Winthrop, MD, MPH
- Funder: AN2 Therapeutics, Inc.
- Project Summary: The study is a multi-site, double-blind, randomized, placebo-controlled, parallel-group, multicenter, prospective, investigator-initiated trial designed to evaluate epetraborole (EBO) monotherapy for the treatment of Mycobacterium abscessus complex (MABc) lung disease. Primary outcome is clinical response (symptom improvement).
- Clinicaltrials.gov link: https://clinicaltrials.gov/study/NCT07301320
CRISPR detection of circulating cell-free Mycobacterium avium complex (MAC) DNA for rapid diagnosis and monitoring of MAC pulmonary disease (CRISPR)
- PIs: Kevin Winthrop, MD, MPH & Bo Ning, PhD
- Funder: NIH/NIAID
- Project Summary: The study is a multi-site, observational study designed to validate the detection of MAC cell-free DNA (cfDNA) from blood samples of patients with MAC pulmonary disease using a retrospective cohort, and to monitor disease during treatment using longitudinal samples using a prospective cohort. Primary outcome is change from MAC-cfDNA positive to negative from baseline to 12 months.
- RePORTER link: https://reporter.nih.gov/search/gejk6PoNaUiqgzX9NNlljA/project-details/10882269
Mycobacterium avium complex pulmonary infection: immunologic and transcriptomic signatures of disease and treatment response (IMMTR)
- PIs: Kevin Winthrop, MD, MPH; David Lewinsohn, MD , PhD; & Shannon McWeeney, PhD
- Funder: NIH/NIAID
- Project Summary: The study is a multi-site, observational, prospective study which utilizes a sub-population of the CRSIPR Study. IMMTR is a longitudinal study designed to characterize immune profiles of disease throughout the duration of guideline treatment for MAC pulmonary disease, with the goal of defining disease signatures and biomarkers predictive of treatment response.
- RePORTER link: https://reporter.nih.gov/search/qkZj_NR2E0-0hxz8rfJUaw/project-details/11174964
Patient reported outcomes in patients with nontuberculous mycobacterial pulmonary disease (NTM PRO cohort)
- PI: Emily Henkle, PhD, MPH
- Funder: NIH/NHLBI
- Project Summary: Patient-reported outcome (PRO) measures are a patient- centered way to measure symptoms, functioning, and symptomatic adverse events over time. The study is a multi-site, observational study designed to understand the trajectory of symptoms and their association with NTM pulmonary disease activity, response, and recurrence after treatment completion.
- RePORTER link: https://reporter.nih.gov/project-details/11166697
Phase 2 Study of the Efficacy and Safety of ORC-13661 for the Prevention of Drug-Induced Hearing Loss in Patients Receiving Intravenous Amikacin Therapy for Non-Tuberculous Mycobacterium Disease (SOUNDS)
- Principal Investigators: Kevin Winthrop, MD, MPH and Edwin Rubel, PhD
- Funder: National Institute on Deafness and Other Communication Disorders (NIDCD)/National Institutes of Health (NIH)
- Overview: The goal of this clinical trial is to test the effectiveness of the study drug, ORC-13361, in preventing hearing loss in patients with NTM infection who are undergoing treatment with IV amikacin therapy. The main questions this study aims to answer are: Is ORC-13661 effective for preventing or lessening hearing loss induced by amikacin treatment? And Is ORC-13661 effective for preventing or lessening other measures of hearing impairment?
- Participating Sites: Oregon Health & Science University, University of Texas at Tyler, Mayo Clinic Rochester, National Jewish Health, Medical University of South Carolina, University of California San Francisco, Johns Hopkins University, Northwell Health, Stanford University
- Clinicaltrials.gov link: https://clinicaltrials.gov/study/NCT05730283
Hypertonic Saline for Treatment of Pulmonary Mycobacterium Avium Complex (MAC) Disease
- PI: Kevin Winthrop, MD, MPH
- Funder: Nontuberculous Mycobacteria Info & Research (NTMir)
- Project Summary: The study is a open label, randomized control trial testing whether hypertonic saline helps improve symptoms and clearance of mycobacteria in patients with MAC lung infections. Primary outcome is AFB culture conversion.
- Clinicaltrials.gov link: https://clinicaltrials.gov/study/NCT04921943
Mycobacterium Avium Complex Core
- PI: Cara Varley, MD, MPH
- Funder: National Heart, Lung, and Blood Institute: K23 HL161495
- Project Summary: Researchers at Oregon Health & Science University have designed a study to identify the most important outcome measurement instruments for Mycobacterium avium complex (MAC) pulmonary disease research. Our goal is to get opinions about potential measurement instruments from many types of people involved with MAC-PD, and for the group to come to an agreement about which measurement instruments should be used. The research team hopes the results of this study will help patients deal with pulmonary MAC disease in the short-term and long-term. The study is currently enrolling.
- To participate in this study, see here: Links to participate can be found here: https://ohsu-psu-sph.org/research/cids/research-projects/ https://redcap.link/maccor
Completed studies
Comparison of Two- Versus Three-antibiotic Therapy for Pulmonary Mycobacterium Avium Complex Disease (MAC2v3)
- PI: Kevin Winthrop, MD, MPH
- Funder: Patient-Centered Outcomes Research Institute (PCORI)
- Project Summary: The study is a multicenter, randomized, pragmatic clinical trial to compare and determine if azithromycin + ethambutol (2-drug therapy) is non-inferior to azithromycin + ethambutol + rifampin (3-drug therapy) for non-cavitary pulmonary MAC disease. Primary outcome is culture conversion.
- Clinicaltrials.gov link: https://clinicaltrials.gov/study/NCT03672630
Clofazimine in the Treatment of Pulmonary Mycobacterium Avium Complex (MAC)
- PI: Kevin Winthrop, MD, MPH
- Funder: U.S. Food & Drug Administration (FDA)
- Project Summary: The purpose of this study is to evaluate the clinical effectiveness and safety of clofazimine when used to treat Mycobacteria avium complex (MAC) lung disease.
- Clinicaltrials.gov link: https://clinicaltrials.gov/study/NCT02968212
Development of Pulmonary Nontuberculous Mycobacterial Disease Symptom Scale (NTM-SS), Pulmonary NTM Infection
- PI: Emily Henkle, PhD
- Funder: U.S. Food & Drug Administration (FDA)
- Project Summary: The objective of this study was to develop, test, and validate a disease-specific patient-reported outcome (PRO) measure in well-characterized population of patients with NTM
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