A research team led by Dr. Kevin Winthrop at Oregon Health and Science University (OHSU) has been working on a Patient-Centered Outcomes Research Institute (PCORI)-funded project designed to identify priorities and create a roadmap for bronchiectasis research. The project is an important collaboration between patients, NTM Info & Research, the COPD Foundation, researchers, and healthcare providers from across the U.S. You are invited to share your thoughts and experience with bronchiectasis in a brief, anonymous patient survey. The survey link is provided at the end.
A research roadmap is made up of several components:
- Background describing why the roadmap is needed
- Key research questions that need to be answered
- Next steps to answer the research questions
For this patient-centered roadmap development process, patient input is critical. OHSU is seeking a broad base of patients and stakeholders who will be able to review and comment on research priorities, outcomes, and treatment comparisons of interest to patients, and suggest mechanisms to fund needed research. The roadmap will provide essential direction for future non-CF bronchiectasis research and therefore the most efficient progress in caring for patients with this disease.
If you are interested in lending your voice for this project, you can access the survey here:
Insmed Incorporated is recruiting patients diagnosed with Nontuberculous Mycobacterial (NTM) lung infection that is caused by Mycobacterium avium complex (MAC) to enroll in a Phase 3 study (the "CONVERT" study). The CONVERT study is evaluating an investigational medication—Liposomal Amikacin for Inhalation (LAI)—in adult patients with Nontuberculous Mycobacterial (NTM) lung infections caused by Mycobacterium avium Complex (MAC).
We are looking for patients, aged 18 years and older, with NTM lung disease caused by MAC, who have not experienced success with previous treatment. You may be eligible for participation in this clinical research study if you have an NTM lung disease caused by MAC, and continue to test positive for MAC while taking your oral antibiotics.
If you would like to participate, and you are eligible, you will be randomized to one of two groups: one group will receive LAI in addition to oral antibiotics, and one group will receive only the oral antibiotics. Participants will be required to attend study visits approximately once a month for up to 31 months.
By participating in the CONVERT study, you contribute to the understanding of chronic lung infections due to MAC, how the body processes LAI through pharmacokinetics, and whether successful treatment with LAI can help improve quality of life.
If you or someone you love has this condition or suspects it, you can find out more about this new research study, find study locations near you, or request to be contacted by a study site, by visiting www.ConvertResearchStudy.com or calling 866-825-3418.
NTMir is conducting a survey on the use of Proton Pump Inhibitors (PPIs) for the treatment of GERD and other related conditions.
The results of a study led by researchers at Johns Hopkins University were recently published in the Journal of the American Medical Association (JAMA), regarding the use of Proton Pump Inhibitors (PPIs) and chronic kidney disease (CKD) as well as acute kidney injury (AKI).
This study concluded that the use of PPIs, which are commonly and widely used to treat conditions such as gastroesophageal reflux disease (GERD), is associated with a higher risk incident of CKD and AKI.
If you are currently taking a PPI, please take a few minutes to complete a brief survey. The data from this survey may help shape future treatment recommendations for NTM patients.
And if you are taking a PPI, please speak with your physician about regular monitoring of your kidney function.
Survey link: https://www.surveymonkey.com/r/QPFZVHT