Evolution of the Bronchiectasis and NTM Initiative to Bronchiectasis and NTM 360
Establishment of the Bronchiectasis Research Consortium and Development of the Bronchiectasis Research Registry
In 2007, in response to requests from key opinion leaders, the COPD Foundation, in collaboration with the National Heart, Lung and Blood Institute, convened a workshop to discuss the unmet need to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of non-CF bronchiectasis. The consensus recommendation from the workshop was that it was necessary to establish a Bronchiectasis Research Consortium in an effort to address the critical, but unmet needs of this community. The first priority of the Consortium (comprised of physicians from several academic medical centers across the U.S.) was to create a clinical registry to serve as a platform to collect data for use in research to better understand non-CF bronchiectasis. As a result of this, with a generous donation from the family of Richard H. Scarborough, the COPD Foundation developed the Bronchiectasis Research Registry.
Expansion of the Registry to include NTM lung disease in Partnership with NTM Info and Research
Given the link between bronchiectasis and NTM lung disease, the COPD Foundation partnered with NTM Info & Research in 2011 to expand the NTM data collected in the Registry. The Registry was then renamed the Bronchiectasis and NTM Research Registry.
Establishment of the Bronchiectasis and NTM Initiative and Launch of BronchandNTM360social
In 2016, the Foundation expanded its bronchiectasis and NTM efforts by establishing the Bronchiectasis and NTM Initiative, which brought an emphasis on disease awareness and community education, in addition to research. As part of the Initiative, the Foundation launched BronchandNTM360social, an online community for individuals affected by bronchiectasis and/or NTM, including patients, family members, caregivers, physicians and other health care providers. In years that followed, the Initiative developed educational materials and resources and hosted live events in order to educate and engage the community.
Launch of the Bronchiectasis and NTM Information Line
In 2017, the Bronchiectasis and NTM Initiative created the Bronchiectasis and NTM Information Line, which serves as an excellent resource for those seeking information about the diseases.
Launch of the Bronchiectasis and NTM Ambassador Program
The Bronchiectasis and NTM Ambassador Program was launched in 2019 to educate and empower the patient community. The Bronchiectasis and NTM Ambassadors are volunteers living with bronchiectasis and/or NTM and are working with fellow patients, equipping them with the knowledge they need to seek the best treatment plan that fits their unique needs.
Team Growth, Launch of the Home Sputum Collection Project, and Evolution to Bronchiectasis and NTM 360
By 2021, the Bronchiectasis and NTM Initiative was well underway with several ongoing research projects through the Registry. However, the need to provide more extensive educational resources was apparent. In January, the Initiative team was expanded, and the curation and development of more educational content was offered to the community through the Bronchiectasis and NTM Initiative website.
This same year, Dr. Timothy Aksamit joined the COPD Foundation team as the Bronchiectasis and NTM Medical Director. In this role, Dr. Aksamit oversees bronchiectasis and NTM projects and studies from a clinical perspective and advises on research strategy and partnership integration.
In late Summer, in partnership with National Jewish Health, NTM Info and Research, and Insmed, the COPD Foundation launched the Home Sputum Collection Project to enhance the process of NTM lung disease detection and diagnosis.
It was becoming increasingly clear that the Foundation’s commitment to the Bronchiectasis and NTM community could not be defined in a single initiative. Following the lead and needs of the community, the Initiative has evolved into a larger effort. Bronchiectasis and NTM 360 is designed to continue to expand offerings to the community. The 360 approach mobilizes partnerships across all stakeholder groups to increase disease awareness, community education and engagement, and focus on research that will ultimately lead to the development of therapeutics for bronchiectasis and NTM.