Videos & Articles about NTM, MAC or bronchiectasis and treatments

I received this email today with another NTM study. If you fit the requirements and want to participate in the study, click on the link below.
Could you keep us all posted if you join the study? I believe there is a study at the teaching hospital where I am being treated.

Dear Paula,

We are writing to let you know about a clinical research study that may be of interest to you. 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 to participate in this clinical research study if you have an NTM lung infection 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 treatment, and one group will receive only the oral treatment. 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, the effects of the investigational medicine LAI on the infection and the body, and how the body processes LAI, and whether LAI can be shown to have an acceptable safety profile when used by patients like you.

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 calling 866-825-3418 or visiting our website, http://www.ConvertResearchStudy.com.

Sincerely,
The CONVERT Study Team
http://www.ConvertResearchStudy.com

Thank you for sharing this Paula. Mayo Clinic is participating in this trial. Lead Timothy Aksamit, M.D. http://www.mayo.edu/research/clinical-trials/cls-20147219

All,
Here is the listing of this trial on the ClinicalTrials.gov website as well. It lists all 132 locations nation wide. https://clinicaltrials.gov/ct2/show/NCT02344004?term=insmed+and+NTM&rank=2

For anyone who has never participated in a clinical trial, I highly recommend reading more about taking part in clinical trial on the .gov site here https://clinicaltrials.gov/ct2/about-studies/learn This overview provides information about:
- What Is a Clinical Study?
- Clinical Trials
- Observational Studies
- Who Conducts Clinical Studies?
- Where Are Clinical Studies Conducted?
- How Long Do Clinical Studies Last?
- Reasons for Conducting Clinical Studies
- Participating in Clinical Studies
- Who Can Participate in a Clinical Study?
- How Are Participants Protected?
- Relationship to Usual Health Care
- Considerations for Participation
- Questions to Ask

If that is too much to read, here's a shorter version from Mayo Clinic http://www.mayo.edu/research/clinical-trials/about-clinical-studies and http://www.mayo.edu/research/clinical-trials/deciding-to-volunteer

Thank you so much, Colleen, for sending the shortened versions on participating in clinical trials. Good to know Mayo Clinic is taking part in this.

Article: Inhaled Steroids May Increase Risk of Nontuberculous Mycobacteria Lung Disease
Date: May 2016, American Thoracic Society (ATS)
Source: https://www.newswise.com/articles/view/653101/

Patients with obstructive lung disease who take inhaled corticosteroids (ICS) may be at greater risk for nontuberculous mycobacteria pulmonary disease (NTM PD), according to new research presented at the ATS 2016 International Conference.

Article: Researchers Identify Risk Factors for Little-Known Lung Infection
Date: March 2014, The University of Illinois at Chicago
(originally cited in PLoS ONE - a peer-reviewed open access scientific journal published by the Public Library of Science (PLOS) since 2006)
Source: https://www.newswise.com/articles/view/615126/

Dr. Mehdi Mirsaeidi, UIC pulmonary and critical care fellow and lead author of the paper, said “We wanted to know more about exactly who is most at risk for acquiring NTM and dying from it, so that we could develop strategies for preventing infection.” The researchers looked at the cause of deaths in the U.S. between 1999 and 2010. NTM was listed as immediate cause of death for 2,990 people — of whom 87 percent were 55 or older, 85 percent were white, and 52 percent were female.

Hey, Im new to this site. Found it while doing research. Was diagnosed with non tb MAC this past year. Dont have time at this moment to get into all of the details. Will post at a later time. I am on 4 daily antibiotics which I have tolerated very well. I have over the past 10 years been taking supplements. When discussing this with my ID Doc, she told me to keep taking them, that was probably what had kept me alive. Anyway, one of those is the Amikacin for Inhalation (Nebulizer). Been on the meds for about 7 months. Last ct scan showed some improvement. Thought I would share. Praying you all have a great day. Keep your chin up! Its good to know I am not alone. But also hate that you all are going thru this. @melissa23 - I have some questions about the sinnus Mycobacerrum terrae. I have very bad sinus problems and have felt from the time of the diagnosis that this is part of my problem. Any info is appreciated.

Welcome @lori52. When you return with details, may I suggest that you introduce yourself in the main discussion thread in the MAC group here: http://mayocl.in/2jGRk0v That way your message will reach everyone in the group.

We look forward to getting to know you better.

Hi @lori52 I feel the same way, I also know others the same, a good friend had a ct and everything was ok so dont know if its part of MAC or not, would love to know tho.

Throughout discussions in the MAC & Bronchiectasis group, members refer to the Carolyn and Matthew Bucksbaum Nontuberculous Mycobacteria (NTM) Lecture Series For Patients and Families hosted by National Jewish Health. Let's use this discussion started by @Paula_MAC2007 to continue gather videos and other useful educational resources to learn more about NTM.

VIDEOS: NTM Lecture Series, NJH, Denver on September 17, 2016 https://www.nationaljewish.org/ntmvideos2016

What resources would you like to add?

NTM GENETIC RESEARCH: The NTM Info & Research organization emailed me this information today. Just ignore the part about making a donation. I merely wanted people to know they are doing this research, and the doctor involved from the Miami area.

Additional info: https://ntm.charityproud.org/Donate/?cid=639
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The NTM community has a unique opportunity to be a part of a groundbreaking genetic study, NTMGene.

This project is aimed at helping physicians and researchers better understand the population at risk based on their genetic background and to improve therapies with the future goal of a more personalized medical approach to treatment. NTMGene will study the genetic susceptibility for NTM-related disease and the pharmacogenomics of anti-NTM medications in the U.S.

Meet Dr. Mehdi Mirsaedi, MD, MPH, who has devoted his career to NTM research and is the principal investigator on NTMGene.

Tell us a little about yourself and how you choose your career-path.

I grew up in Iran with a father who had suffered from lung issues which was the catalyst for my many questions about respiratory infections. As early as middle school I was conducting lab experiments in my basement! I graduated from Tehran University of Medical Science and moved to the U.S. in 2006 for my fellowships in infectious diseases and advanced pulmonology. In 2015, I moved to Miami with my wife to concentrate on TB and Non-TB infections.

How have your NTM patients inspired you?

When I was at the University of Illinois-Chicago, I began to see more and more NTM patients. They were often female, older, tall and thin. I couldn't answer their cries of 'Why me?' which inspired me to continue to focus on the mystery of NTM-related disease. Why are some patients more susceptible to this infection? How do we get diagnoses tailored in the right way so therapies can be more effective?

How will NTMGene benefit those with NTM-related disease?

The prevalence of NTM-related disease is on the rise in North America in people older than 50 years of age - and the population is aging. NTM exceeds that of tuberculous but the why, when and how the infections occurs and to which patients remains largely unknown.

NTMGene is the only known study that will focus on the genomics of NTM-related disease on a national level. We need improved diagnosis and therapies but we still do not understand who is at risk. I believe NTMGene will provide a critical puzzle piece in that mystery. Knowing the genetic predisposition and pharmacogenomics will aid in superior treatment for this disease. And, this data will be a unique contribution to NTM science as a whole.

What can we do as a community to help?

NTM research is under-funded. NTM's prevalence is three times that of Cystic Fibrosis (CF), yet CF researchers continue to develop excellent treatments.

We are asking you to support the NTMGene project through a donation to NTM Info & Research. They will play an integral role in recruitment of patients and subsidizing the cost of genetic testing. As soon as we launch, NTM patients and healthy people will be asked to participate by providing saliva samples for genotyping through 23andMe (www.23andMe.com). Our goal is to enroll 1,000 patients and 1,000 healthy subjects. The project will be done in two phases. Phase I will recruit 500 NTM patients and 500 healthy matched control subjects. Phase II will recruit another 500 patients and 500 healthy matched subjects as a validation group.

Please, help us strive for improved quality of life and treatment for those with NTM-related disease. TOGETHER AS A COMMUNITY we can launch this GROUNDBREAKING GENETIC STUDY BY MAKING A DONATION TODAY.