Pulmonary non-tuberculous mycobacterial infection

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3FDA treatments11Active trials39Specialists8Treatment centers2Financial resources

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UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Pulmonary non-tuberculous mycobacterial (NTM) infection is a lung disease caused by a group of bacteria called non-tuberculous mycobacteria. These are bacteria found naturally in soil, water, and dust that are related to the germ that causes tuberculosis (TB) but are different organisms. Unlike TB, NTM lung infections are not spread from person to person. The bacteria enter the lungs through breathing in contaminated water droplets or soil particles. Not everyone exposed to NTM gets sick — the infection tends to develop in people whose lungs are already damaged or whose immune systems are weakened. Common symptoms include a chronic cough that does not go away, coughing up mucus or blood, fatigue, shortness of breath, fever, night sweats, and unintended weight loss. The disease can progress slowly over months or years, and some people may not realize they are sick for a long time. Two main patterns of lung disease are recognized: a form with cavities (holes) in the upper lungs, often seen in older men with a history of smoking or lung disease, and a nodular bronchiectatic form more commonly seen in older, thin women without prior lung disease (sometimes called Lady Windermere syndrome). The most common NTM species causing lung disease is Mycobacterium avium complex (MAC), followed by Mycobacterium abscessus and Mycobacterium kansasii. Treatment typically involves a combination of multiple antibiotics taken for 12 to 18 months or longer. Treatment can be challenging because NTM bacteria are naturally resistant to many antibiotics, and side effects from long-term therapy are common. Some patients with severe or localized disease may benefit from surgery to remove the affected part of the lung. While some genetic susceptibility factors have been identified, this is primarily an infectious disease influenced by host factors rather than a single-gene genetic disorder.

Also known as:

Key symptoms:

Chronic cough lasting weeks or monthsCoughing up mucus or phlegmCoughing up bloodShortness of breathFatigue and low energyUnexplained weight lossFeverNight sweatsChest painWheezingRecurrent lung infectionsLoss of appetiteGeneral feeling of being unwell

Clinical phenotype terms (21)— hover any for plain English
Pulmonary opacityHP:0031457Abnormal sputumHP:0032016Chronic pulmonary obstructionHP:0006510CracklesHP:0030830Mycobacterium abscessus abscessus infectionHP:0032130Disseminated nontuberculous mycobacterial infectionHP:0032283
Inheritance

Multifactorial

Caused by a mix of several genes and environmental factors

Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

FDA & Trial Timeline

10 events
Apr 2027Testing a Novel Combination Treatment (Arm D) Versus Standard of Care for Intensive Phase Treatment for Mycobacterium Abscessus Pulmonary Disease in People With or Without Cystic Fibrosis in the Finding the Optimal Regimen for Mycobacterium Abscessus Treatment (FORMaT) Adaptive Platform Trial

The University of Queensland — PHASE2

TrialNOT YET RECRUITING
Jan 2026Clinical Characteristics and Immune Escape Mechanism of Nontuberculous Mycobacterial Lung Disease in South China

Eighth Affiliated Hospital, Sun Yat-sen University

TrialNOT YET RECRUITING
Jan 2026Association of Nutrition and T Cell Immune Activity With Disease Progression in Nontuberculous Mycobacterial Pulmonary Disease

Seoul National University Hospital

TrialNOT YET RECRUITING
Nov 2025Bacteriophage Therapy for Mycobacterium Abscessus Pulmonary Infection

Vancouver Coastal Health — PHASE1

TrialENROLLING BY INVITATION
Aug 2025Health Impact of Non-Tuberculous Mycobacteria Pulmonary Disease (NTM-PD)

University College, London — NA

TrialRECRUITING
Jul 2025Short-term Antibiotic Therapy in Mycobacterium Avium Complex Pulmonary Disease

Bin Cao — PHASE4

TrialRECRUITING
Jul 2025Prevention of Recurrence With Cordyceps Sinensis in Mycobacterium Avium Complex Pulmonary Disease

Bin Cao — PHASE4

TrialRECRUITING
Jul 2025Short-term Bactericidal Effect of Contezolid in MAC-PD

Bin Cao — PHASE4

TrialRECRUITING
Jul 2025Treatment Monitoring for NTM Infections With a Symptom Diary

Research Center Borstel

TrialRECRUITING
Jun 2025Prevention of Ototoxicity in NTM Patients Treated With IV Amikacin

Kevin Winthrop — PHASE2

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

3 available

SIRTURO

bedaquiline· Janssen Research & Development, LLC■ Boxed Warning
SIRTURO is a diarylquinoline antimycobacterial drug indicated as part of combination therapy in the treatment of adult and pediatric patients (2 years and older and weighing at least 8 kg) with pulmon

SIRTURO is a diarylquinoline antimycobacterial drug indicated as part of combination therapy in the treatment of adult and pediatric patients (2 years and older and weighing at least 8 kg) with pulmonary tuberculosis (TB) due to Mycobacterium tuberculosis resistant to at least rifampin and isoniazid

Mycobutin

Rifabutin· Adria Laboratories, Inc.

Rifabutin capsules are indicated for the prevention of disseminated Mycobacterium avium complex (MAC) disease in patients with advanced HIV infection

Arikayce

liposomal amikacin· Insmed Incorporated■ Boxed WarningAccelerated Approval
indicated in adults, who have limited or no alternative treatment options, for the treatment of Mycobacterium avium complex (MAC) lung disease as part of a combination antibacterial drug regimen in pa

indicated in adults, who have limited or no alternative treatment options, for the treatment of Mycobacterium avium complex (MAC) lung disease as part of a combination antibacterial drug regimen in patients who do not achieve negative sputum cultures after a minimum of 6 consecutive months of a multidrug background regimen therapy

Clinical Trials

11 recruitingView all trials with filters →
Phase 44 trials
Prevention of Recurrence With Cordyceps Sinensis in Mycobacterium Avium Complex Pulmonary Disease
Phase 4
Actively Recruiting
PI: Xiaojing Cui, M.D. (China-Japan Friendship Hospital) · Sites: Hefei, Anhui; Beijing, Beijing Municipality +4 more · Age: 1875 yrs
Hypertonic Saline Inhalation for Mycobacterium Avium Complex Pulmonary Disease
Phase 4
Actively Recruiting
· Sites: Nijmegen · Age: 1899 yrs
Short-term Bactericidal Effect of Contezolid in MAC-PD
Phase 4
Actively Recruiting
PI: Xiaojing Cui, M.D. (China-Japan Friendship Hospital) · Sites: Beijing, Beijing Municipality; Beijing, Beijing Municipality +1 more · Age: 1875 yrs
Short-term Antibiotic Therapy in Mycobacterium Avium Complex Pulmonary Disease
Phase 4
Actively Recruiting
PI: Xiaojin Cui, M.D. (China-Japan Friendship Hospital) · Sites: Hefei, Anhui; Beijing, Beijing Municipality +4 more · Age: 1875 yrs
Phase 21 trial
Clofazimine in the Treatment of Pulmonary Mycobacterium Avium Complex (MAC)
Phase 2
Active
PI: Kevin Winthrop, MD (Oregon Health and Science University) · Sites: Denver, Colorado; Tampa, Florida +5 more · Age: 1899 yrs
Phase 11 trial
Bacteriophage Therapy for Mycobacterium Abscessus Pulmonary Infection
Phase 1
Enrolling by Invitation
· Sites: Vancouver, British Columbia
N/A1 trial
Health Impact of Non-Tuberculous Mycobacteria Pulmonary Disease (NTM-PD)
N/A
Actively Recruiting
PI: Naif S Sulaiman, PhD Candidate · Sites: London · Age: 1899 yrs
Other4 trials
Improving the Outcomes of Children With Tuberculosis Through Innovative Diagnostics and Treatment Monitoring
Actively Recruiting
PI: Christoph Lange, Professor (Research Center Borstel) · Sites: Bucharest, BUC · Age: 014 yrs
A Prospective, Multicenter, Single-arm MAC-PD Cohort: a NTM-NET and ESGMYC Collaborative Study
Actively Recruiting
PI: Jakko van Ingen, MSc, PhD (Radboud University Medical Center) · Sites: Portland, Oregon; Leuven +9 more · Age: 1899 yrs
Treatment Monitoring for NTM Infections With a Symptom Diary
Actively Recruiting
PI: Christoph Lange, Prof. Dr. med. Dr. h.c. (Clinical Infectious Diseases, Research Center Bors) · Sites: Freiburg im Breisgau, Baden-Wurttemberg; Frankfurt am Main, Hesse +1 more · Age: 1899 yrs
Drug Exposure and Minimum Inhibitory Concentration in the Treatment of MAC Lung Disease
Actively Recruiting
PI: Wei Sha, MD, Prof (Shanghai Pulmonary Hospital, Shanghai, China) · Sites: Shanghai · Age: 1899 yrs

Specialists

Showing 25 of 39View all specialists →
FC
Francesca Conradie
Specialist
PI on 1 active trial
MM
Morounfolu Olugbosi, MD
Specialist
PI on 2 active trials
FM
Francesca Conradie, MD
Specialist
PI on 1 active trial
LP
Laiyu Liu, PhD
Specialist
PI on 1 active trial
LP
Lei Zheng, PhD
RALEIGH, NC
Specialist
PI on 1 active trial
PF
Patrick Flume
CHARLESTON, SC
Specialist
PI on 1 active trial
AM
Andrew J Lipton, M.D.
BETHESDA, MD
Specialist
PI on 2 active trials
CL
Chung Yan Grace Lui
Specialist
PI on 2 active trials13 Pulmonary non-tuberculous mycobacterial infection publications
AM
Andrej Spec, MD
SAINT LOUIS, MO
Specialist
PI on 2 active trials1 Pulmonary non-tuberculous mycobacterial infection publication
KM
Kevin L Winthrop, MD, MPH
PORTLAND, OR
Specialist
PI on 2 active trials
EP
Edwin Rubel, PhD
Specialist
PI on 1 active trial
GE
Gina Eagle
Specialist
PI on 1 active trial
AM
Alexander Mischnik, Prof. Dr. med.
Specialist
PI on 1 active trial
DF
Doreen Addrizzo-Harris, MD, FCCP
NEW YORK, NY
Specialist
PI on 1 active trial
TM
Theodore Marras, MD
Specialist
PI on 1 active trial
XM
Xiaojin Cui, M.D.
Specialist
PI on 1 active trial
EB
Elisabeth Botelho-Nevers
Specialist
PI on 1 active trial
JP
Jae-Joon Yim, MD, PhD
Specialist
PI on 3 active trials
DH
Daniel Hoft
ST LOUIS, MO
Specialist
PI on 1 active trial
FM
Fu-Tsai Chung, M.D.
Specialist
PI on 1 active trial
FD
Florence Doucet-Populaire
Specialist
PI on 1 active trial1 Pulmonary non-tuberculous mycobacterial infection publication
AL
Amanda Lopes
Specialist
PI on 1 active trial77 Pulmonary non-tuberculous mycobacterial infection publications
CD
Charles Daley
LEBANON, TN
Specialist
PI on 1 active trial2 Pulmonary non-tuberculous mycobacterial infection publications

Treatment Centers

8 centers
⚗️ Trial Site

Nationwide Children's Hospital

📍 Columbus, Ohio

⚗️ Trial Site

University of Alabama at Birmingham

📍 Birmingham, Alabama

⚗️ Trial Site

University of Pittsburgh Medical Center

📍 Pittsburgh, Pennsylvania

⚗️ Trial Site

Johns Hopkins University

📍 Baltimore, Maryland

⚗️ Trial Site

National Jewish Health

📍 Denver, Colorado

⚗️ Trial Site

University of Texas Southwestern

📍 Dallas, Texas

⚗️ Trial Site

Medical University of South Carolina

📍 Charleston, South Carolina

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

Financial Resources

2 resources
Arikayce(liposomal amikacin)Insmed Incorporated

Rifadin I.V.

Hoechst Marion Roussel

Unverified — confirm before calling
copay card
copay assistancePatient Assistance
Accepting applications

Travel Grants

No travel grants are currently matched to Pulmonary non-tuberculous mycobacterial infection.

Search all travel grants →NORD Financial Assistance ↗

Community

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Latest news about Pulmonary non-tuberculous mycobacterial infection

Disease timeline:

New recruiting trial: Treatment Monitoring for NTM Infections With a Symptom Diary

A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection

New recruiting trial: Improving the Outcomes of Children With Tuberculosis Through Innovative Diagnostics and Treatment Monitoring

A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection

New recruiting trial: Mycobacterial Lung Diseases in Virginia: Sequencing and Clinical Determinants of Relapse and Outcome

A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection

New recruiting trial: Prevention of Ototoxicity in NTM Patients Treated With IV Amikacin

A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection

New recruiting trial: Biomarkers of Phage Treatment Response in NTM and Other Infections

A new clinical trial is recruiting patients for Pulmonary non-tuberculous mycobacterial infection

New trial: Health Impact of Non-Tuberculous Mycobacteria Pulmonary Disease (NTM-PD)

Phase NA trial recruiting.

New trial: IV Gallium Study for Patients With Cystic Fibrosis Who Have NTM (ABATE Study)

Phase PHASE1 trial recruiting. Gallium nitrate

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Questions for your doctor

Bring these to your next appointment

  • Q1.What species of NTM is causing my infection, and how does that affect my treatment plan?,How long will I need to take antibiotics, and what side effects should I watch for?,Should I be tested for any underlying immune or genetic conditions that might make me more susceptible?,What lifestyle changes can I make to reduce my risk of reinfection or worsening?,How often will I need follow-up tests like sputum cultures and CT scans?,Is surgery an option in my case, and what are the risks and benefits?,Are there any clinical trials or newer treatments I should consider?

Common questions about Pulmonary non-tuberculous mycobacterial infection

What is Pulmonary non-tuberculous mycobacterial infection?

Pulmonary non-tuberculous mycobacterial (NTM) infection is a lung disease caused by a group of bacteria called non-tuberculous mycobacteria. These are bacteria found naturally in soil, water, and dust that are related to the germ that causes tuberculosis (TB) but are different organisms. Unlike TB, NTM lung infections are not spread from person to person. The bacteria enter the lungs through breathing in contaminated water droplets or soil particles. Not everyone exposed to NTM gets sick — the infection tends to develop in people whose lungs are already damaged or whose immune systems are weak

How is Pulmonary non-tuberculous mycobacterial infection inherited?

Pulmonary non-tuberculous mycobacterial infection follows a multifactorial inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Pulmonary non-tuberculous mycobacterial infection typically begin?

Typical onset of Pulmonary non-tuberculous mycobacterial infection is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Pulmonary non-tuberculous mycobacterial infection?

Yes — 11 recruiting clinical trials are currently listed for Pulmonary non-tuberculous mycobacterial infection on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Pulmonary non-tuberculous mycobacterial infection?

25 specialists and care centers treating Pulmonary non-tuberculous mycobacterial infection are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Pulmonary non-tuberculous mycobacterial infection?

4 patient support programs are currently tracked on UniteRare for Pulmonary non-tuberculous mycobacterial infection. See the treatments and support programs sections for copay assistance, eligibility, and contact details.