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Videos & Articles about NTM, MAC or bronchiectasis and treatments
MAC & Bronchiectasis | Last Active: Jun 8, 2017 | Replies (10)Comment receiving replies
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
Replies to "I received this email today with another NTM study. If you fit the requirements and want..."
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.
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.
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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