FEATURE RESEARCH
Mycobacterium Avium Complex Remote Research Study Opportunity
Researchers at Oregon Health & Science University have designed a study to understand what outcomes are important for pulmonary Mycobacterium avium complex (MAC) disease research. The research team hopes the results of this study will help patients deal with pulmonary MAC disease in the short-term and long-term. You may participate in the study if you are between the ages of 18 and 99 and are either:
- A clinical researcher in the field of pulmonary MAC disease
- A clinician for patients with pulmonary MAC disease
- A representative from an organization funding pulmonary MAC disease research
- A person living with pulmonary MAC disease
- A caregiver, close friend or family member of a person living with pulmonary MAC disease.
This study involves taking electronic surveys. Link to participate can be found here:
NTM and Bronchiectasis Research
The Center’s leaders have a special expertise in the study of NTM infection. NTM are naturally-occurring organisms found in water and soil. An NTM lung infection can occur when a person inhales the bacteria from his or her normal environment. Many people never become ill after NTM infection, but others – including the elderly, some younger women and those with existing lung diseases – can develop significant lung problems.
Patients with more severe NTM disease – including those who undergo the 18 to 24 months of a multi-drug treatment used to combat it – can experience significant impacts on their quality of life. And unlike its well-studied “cousin” – Mycobacterium tuberculosis, which causes tuberculosis – much remains unknown about NTM. That complicates both the clinical care of patients and the design of clinical trials to learn more about how the disease can be treated.
Since 2006, Winthrop has led a variety of projects exploring the natural history, burden and treatment of NTM and, more recently, bronchiectasis. (People with NTM infection also often have bronchiectasis.) The Center is one of the founding U.S. research sites in the COPD Foundation’s Bronchiectasis and NTM Research Registry, which was established to help medical centers with expertise on bronchiectasis and NTM work together on research.
The Center places a strong emphasis on the patient-centered aspects of these diseases, and also has partnered with two patient advocacy organizations – NTM Info & Research and the COPD Foundation – on several projects studying the effectiveness of treatments for patients.
NTM Surveillance in Oregon
In partnership with the Oregon Health Authority, the Center has completed several special projects that helped establish statewide measurements of infection in Oregon during 2005 and 2006. The projects also explored outcomes in a sample of a large number of patients with pulmonary NTM. The Center also did additional work that generated the first estimates of the incidence of pulmonary NTM from 2007 through 2012.
Center leaders continue to work to identify new cases of pulmonary NTM, including through monitoring of laboratory results and a regional network of pulmonary and infectious disease clinics that refers patients to OHSU or the Center for clinical care and for research studies.
NTM Research Consortium
The Center founded the NTM Research Consortium , established in 2014 by a group of researchers working to improve NTM patient care and outcomes. Since its inception, the consortium has met annually to further define its mission and vision and prioritize research questions that are important to patients and clinical stakeholders. The consortium includes frequent collaborators Dr. Charles Daley (National Jewish Health), Dr. David Griffith (University of Texas Health Science Center Northeast), and Dr. Kenneth Olivier (National Institutes of Health).
Pacific Northwest NTM Biobank and Data Repository
The Pacific Northwest NTM Biobank was established in 2013 to set up a human specimen and clinical data repository from patients confirmed through laboratory results to have NTM. The biobank and repository are supported by the Oregon Clinical and Translational Research Institute, the American Lung Association and most recently a grant from the American Thoracic Society Foundation/American Lung Association of the Mountain Pacific. The biobank has enrolled more than 400 patients and is continuing to enroll.
Center researchers are using the NTM biobank to explore specific questions about NTM, including:
NTM biomarkers
Why NTM progresses in some patients is unknown and largely unexplored. Today, physicians cannot predict which patients will suffer disease progression or would benefit from antibiotic therapy. In collaboration with David Lewinsohn, M.D, Ph.D., a tuberculosis immunologist at OHSU, Center researchers are conducting pilot studies using biobank samples to evaluate immune responses in patients with NTM disease. We are specifically interested in predictors of disease development after infection and predictors of treatment response.
Assessing patient quality of life
Center researchers are evaluating the health-related quality of life in NTM patients. Patients and doctors have reported that improvement in symptoms and ability to function is an important outcome of treatment for NTM patients. In a prior Center research project, patients identified health-related quality of life as the most important outcome that current and future research should measure.
The Center is collaborating with Alexandra Quittner, Ph.D., a professor of psychology at the University of Miami, to validate measures developed for bronchiectasis and NTM. In addition, our research is examining whether quality of life measurements can be used to measure how well NTM treatment is working.
Comparative Effectiveness Research
Center researchers are working with a patient advisory panel, the COPD Foundation, NTM Info & Research and researchers at other institutions on a comparative effectiveness study sponsored by the Patient-Centered Outcomes Research Institute, a nonprofit institute. We are evaluating the benefits and harms of the most common therapies prescribed for bronchiectasis. To do that, we are using data on a large group of bronchiectasis patients from the Centers for Medicare and Medicaid Services.