NTM Lung Disease: Support Resources and Research and What you Need to Know
Posted on July 27, 2020 |
This post was authored by Jane Martin, BA, CRT
This is the final in a series of four blog posts on nontuberculous mycobacterial (NTM) lung disease. Thank you to Made Pramana for sharing the patient perspective in this post.
In the first three blog posts, we learned about NTM lung disease, what it has in common with COPD, what causes it, how it is diagnosed, and how it is treated and managed.
Now let’s look at support resources for people impacted by NTM lung disease and/or bronchiectasis. We will also talk about research.
When a person has been diagnosed with NTM lung disease and/or bronchiectasis, it is of course important to learn from doctors and other health care professionals. These professionals can help individuals with NTM lung disease learn about the physical aspects of the disease and how to stay as active and well as possible despite these diseases.
In addition, it’s essential for the person diagnosed with NTM lung disease and/or bronchiectasis to know where they can find ongoing education, emotional support, and encouragement. Some of this support can come from peers – those who have been diagnosed and are living with the disease every day. Family members and caregivers of those with NTM lung disease and/or bronchiectasis can also benefit from this education and support.
Some educational information on NTM lung disease and/or bronchiectasis can be found online. Here are three trusted websites that contain basic information as well as special features. Each website has a wealth of information that includes much more than is listed here!
- AboutNTM: This is Insmed Incorporated’s NTM lung disease educational site. It contains information about NTM lung disease, patient stories, and downloadable doctor discussion guides for at-risk and diagnosed patients that are offered in a variety of languages. Links to support groups and an online physician locator are also available here. www.aboutntm.com
- The Bronchiectasis and NTM Initiative: This site is overseen by the Bronchiectasis and NTM Initiative which includes the COPD Foundation. It is home to educational information about bronchiectasis and NTM lung disease along with information about the Bronchiectasis and NTM Research Registry (see below). The site houses an active online community of nearly 2,000 individuals. www.bronchiectasisandntminitiative.org
- NTM Info & Research: This website was started, and is run, by individuals impacted by NTM lung disease in response to the need for patient support and information. In addition to educational information on NTM lung disease, the site has questions to ask a doctor and a list of local support groups. www.NTMinfo.org
Visiting an online community is a great way for people with NTM lung disease and/or bronchiectasis, family members, and caregivers to learn from others with the same experiences. It is a place to share thoughts and ideas, ask questions, and communicate with peers as well as experts. Those who do not wish – or are not ready – to join have access to comments and encouragement from community members. Posting a question or making a comment requires free registration.
Patient perspective: The Bronchiectasis/NTM360social community has helped me feel supported and less alone. I meet a lot of people and I learn many things from their stories.
Attending live events online, such as town halls and webinars, is a great way to hear from bronchiectasis and NTM lung disease experts. These live events are usually free of charge and allow time for questions from attendees. Recordings are often available for those who cannot attend the live event. Information on upcoming live events may go out by email or social media (e.g., Facebook, Twitter). Follow this link to a recording of the "Let’s Talk about Nontuberculous Mycobacterial (NTM) Lung Disease" webinar.
In addition to information found online, some educational materials are available as free downloads that can be printed at home. Some are also available in the COPD Foundation online catalogue. The 1s, 2s, and 3s of Bronchiectasis booklet is available to view online, as a free download, and in the catalogue.
The Bronchiectasis and NTM Research Registry1
What is the Bronchiectasis and NTM Research Registry?
The Bronchiectasis and NTM Research Registry is a database of bronchiectasis (the non-cystic fibrosis type) and/or NTM lung disease patients. The research registry is part of the COPD Foundation’s Bronchiectasis and NTM Initiative. The goal of the research registry is to support research and help with planning research studies for the treatment of bronchiectasis and/or NTM lung disease.
Please note that this is a clinical-reported registry rather than a patient-reported registry. This means that patients cannot enroll themselves but first must be seen by a participating doctor.
How does the Bronchiectasis and NTM Research Registry work?
This research registry connects patients who are looking for research studies to researchers who are looking for patients who qualify. There are 16 registry sites with bronchiectasis and NTM lung disease specialists across the United States. More sites are being added.
To enroll in the registry, patients have to be seen – in person or via telehealth – by a participating site. A person with bronchiectasis and/or NTM lung disease fills out a consent form giving permission for information about their disease – results of lung function tests, CT scans, and other tests – to be put into the database. For information on the location and phone number for each center, visit the Bronchiectasis and NTM Research Registry Consortium map.
How does the Bronchiectasis and NTM Research Registry help patients?
Information gathered through this registry can help researchers learn more about bronchiectasis and/or NTM lung disease and potential treatments. The registry also provides information about clinical trials for new treatments that may help people with bronchiectasis and/or NTM lung disease. Even if they might not be able to benefit from current research, some people with bronchiectasis and/or NTM lung disease find it rewarding to take part in research that may lead to a treatment or cure in the future. It helps them to do something that will help others.
Is my health information safe?
State and federal laws require the COPD Foundation to maintain the privacy and security of research participants’ information. The Foundation has built a strong technical structure in compliance with these laws, protecting research participants’ private information.
To access the Bronchiectasis and NTM Research Registry, visit the Bronchiectasis and NTM Initiative website: www.bronchiectasisandntminitiative.org
There are many resources available to those with NTM lung disease and/or bronchiectasis that offer ongoing education, emotional support, and encouragement in their day-to-day life with these diseases. Help from peers who share a diagnosis lets patients know that they are not alone. Continuing research also gives hope for a brighter future.
This blog post is sponsored by Insmed Incorporated.