COPD Foundation

Research & medicalthe Copd Foundation continued the development of the patient inspired validation of outcome tools (pivot) program. Pivot was established to be a driving force for integrating the patient and the patient voice into outcome measurement in chronic lung disease. Workstreams were established to focus on both ct lung density and evaluating respiratory symptoms (e-rs). The e-rs drug master file (dmf) submission to fda was completed as planned in may 2023. A postdoctoral research fellow in the department of health research methods, evidence, and impact (hei) at mcmaster university was onboarded to assist with the development of patient-centered conceptual framework in copd.the Copd Foundation patient powered research network (pprn) will be a network of over 75,000 patients with Copd who have agreed to share their health information and the impact the disease has on their lives. Operated and governed by groups of patients and their partners, the information will be kept in a secure database to be used for research - ultimately leading to a deeper understanding of the disease. The Copd Foundation expanded the reach of the pprn through the efforts of pprn governing board working groups focused on recruitment and engagement. The Copd Foundation onboarded a dedicated staff member to serve as a research coordinator and assist with the growth of the pprn.the Copd Foundation executed, participated in, and otherwise supported the progress of several research studies. These studies focus on a wide range of topics such as patient symptom treatment, virtual Copd management tools, patient feedback on screening tools, and therapy development.bronchiectasis & ntm lung diseasethe Copd Foundation partnered with several global organizations to hold the inaugural world bronchiectasis day awareness campaign. The campaign produced several pieces of digital content for international distribution such as a press release, educational webinars, "all about bronchiectasis" guide and quiz, engagement campaigns, and interactive web pages. The world bronchiectasis day campaign reached thousands of individuals across the world. The Copd Foundation continued to expand its bronchiectasis research registry (brr). The brr is a consolidated database of non-cystic fibrosis (non-cf) bronchiectasis and/or ntm patients from multiple clinical institutions across the united states. The goal of the brr is to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of non-cf bronchiectasis and/or ntm lung disease. New partners continue to be onboarded into the registry, with over 20 partners representing sites across the united states involved in the brr by the end of fy23. Seven abstracts related to the brr were submitted to the american thoracic society conference in Washington, d.c.

Communitythe copd360 community engagement committee (copd360cenco), a diverse patients and caregivers committee, continued to meet monthly to provide the voice of patients and caregivers to all the Copd Foundation's efforts, and to support its interactions with other health care and advocacy organizations. Patient and caregiver involvement in governance and education is the model on which the Copd Foundation was established. With that central goal, the Copd Foundation has built trust within its membership and related stakeholder groups.in march 2023, the Copd Foundation onboarded a dedicated staff person to manage the captains program, which serves as the organization's volunteer force. By june 2023, membership in the captains program had increased by 11%. Captains spread Copd awareness in their state and local areas, mentor fellow Copd community members, and participate in grassroots advocacy and community building activities focused on health policy issues that are important to those who have Copd and other chronic lung diseases.the Copd Foundation continues to support patient wellbeing by providing free monthly support groups for patients and caregivers. Support groups are available for both patients with Copd and patients with bronchiectasis and (nontuberculous mycobacterial) ntm lung disease. Dozens of patients attend these meetings each month to discuss their experiences and learn about topics such as staying healthy during the holidays and talking to their health care providers about their specific issues and symptoms.

Public & professional educationthe Copd Foundation ensures that evidence-based, current education continues to be available to all stakeholders, including patients, caregivers, and health care providers around the world. The Copd guides for better living booklet series, previously available in english and spanish, was additionally translated into russian, french, chinese, arabic, and italian. The Copd Foundation provided continuing education to primary care physicians to share knowledge on treating Copd in patients in primary care settings.the Copd Foundation ensured that patients stay up to date on best practices for managing Copd by updating its pocket consultant guide to utilize the most recent Copd treatment and management guidance. The Copd Foundation provided free monthly support group and informational sessions to supplemental oxygen users to learn about their oxygen devices, ask questions, and cover topics such as care for and traveling with the devices.the Copd Foundation harmonicas for health program encourages participants to perform fun and engaging lung exercises in the form of harmonica playing. Materials for the program have been shared with over 20 wellness centers. The Copd Foundation expanded the reach of the harmonicas for health program to the public venues of minor league baseball games, reaching audiences of thousands and encouraging attendees to get checked for Copd.

Advocacy & public policythe Copd Foundation community works with local, state, and federal policy makers to increase research funding, improve care delivery, protect access to treatments, and create policy that improves the lives of those with Copd, bronchiectasis and nontuberculous mycobacterial (ntm) lung disease. The Copd Foundation centered its fy23 policy efforts on the following priorities:1. Increased investment in research and development of treatments for Copd and chronic lung disease2. Improvement in the regulatory process for acceptance of scientifically validated drug development tools to support the advancement of new treatments for chronic lung conditions3. Access to safe, effective, and affordable oxygen therapy4. Access to effective, affordable, and equitable pulmonary rehabilitation (in-person and via telehealth)5. Stronger regulation of nicotine and tobacco productsprogress has been made on all policy priorities as a direct result of Copd Foundation advocacy efforts. This includes the progression of pulmonary rehabilitation legislation through congress, identification of supporters for supplemental oxygen legislation, and the inclusion of the Copd Foundation's requested report language in the draft budgets of both the u.s. house of representatives and senate for fy24.