COPD Foundation

Research & medicalthe copd360 unique research and therapeutics development platform includes multiple elements such as two patient registries, Copd patient powered research network (Copd pprn) and the bronchiectasis and ntm research registry (brr), two interactive moderated social platforms engaging over 60,000 individuals globally, copd360social and bronchandntm360social, and the recently launched digital and therapeutics network, copd360net. Copd360net supports the development and adoption of novel digital health tools, medical devices and therapeutics that treat Copd, bronchiectasis, and nontuberculous mycobacterial (ntm) lung disease. In order to advance the development of new medicines, or the repurposing of existing drugs, a new approach is needed. In addition, copd360net is focused on implementation science facilitating discovery to delivery.covid-19 related researchat the onset of the covid-19 pandemic, we focused on listening to our community and providing people with accurate, timely, and trusted information. We launched a series of global surveys to capture the experiences of health care providers and people living with Copd, bronchiectasis, alpha-1 antitrypsin deficiency, and ntm lung infections during the covid-19 pandemic. An important insight from this survey series was the increased importance and reliance on telemedicine and virtual platforms to connect with each other, health care professionals, and health and wellness programs. Bronchiectasisandntm360 addresses the unmet needs of the bronchiectasis and nontuberculous mycobacteria (ntm) communities. The 360 framework offers a global online platform for community members to connect and interact, educational resources for patients, and research programs meant to assist in accelerating therapeutic solutions and cures for both, bronchiectasis and ntm. We are fortunate to be able to work collaboratively among all stakeholder groups including patients, caregivers, health care providers, pharmaceutical companies, and device manufacturers to offer programs critical to our common mission.

Communitythe copd360 community engagement committee (copd360cenco), a diverse patients and caregivers committee, was created in september 2020 to provide the voice of patients and caregivers to all of the Copd Foundation's efforts, and to support its interactions with other health care and advocacy organizations. The structure for the copd360cenco supports the development of copd360net, while enhancing the Copd Foundation's regular practice of engaging individuals with Copd, their caregivers, and families.our work with opelousas health of Louisiana promotes Copd awareness and self-management. This targets an underserved population and contains patient and provider materials.

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. While covid-19 was a critical focus of our fy22 education, our community also expressed the need to address other critically important issues, such as coping with a diagnosis and stress, nutrition, exercise, device technique, and many more. To that end, we both updated our existing library and developed new print, video, online, and podcast educational content. We also began translating these to spanish to improve the accessibility of our content.we participated in the annual gold meeting, and the nhlbi constituency group, and created the expert consensus manuscript on nebulizer use. Oxytalk, and facebook/youtube events were well received (do you know about ntm lung disease). A new "patient bundle" includes my Copd action plan and other resources.

4d. Policy & advocacythe 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 is focusing its 2022 advocacy and public policy activities on three main areas:1. Access to safe, effective and affordable oxygen therapy2. Access to effective, affordable pulmonary rehabilitation (in person or via telehealth)3. Improvement in the regulatory process of qualifying drug development tools to support the development of new treatments for chronic lung conditionsin fy22, we focused our advocacy strategy on three key areas: improved access to and reimbursement of pulmonary rehabilitation, safe and efficient delivery of oxygen therapy, and improved acceptance of new drug development tools. Our virtual impact 2022 advocacy event drew more than 50 advocates from around the united states to participate in workshops and calls with their elected representatives. Publications in 2022casaburi r, hess m, porszasz j, clark w, diesem r, tal-singer r, ferguson c. evaluation of over-the-counter portable oxygen concentrators utilizing a metabolic simulator. Respir care. 2022 nov 18:respcare.10495. Doi: 10.4187/respcare.10495. Epub ahead of print. Pmid: 36400446.martinez s, sullivan j, pasquale c, clark b, malanga e, deering s, liu l, stepnowsky cj. Effect of two interventional strategies on improving continuous positive airway pressure adherence in existing Copd and obstructive sleep apnea patients: the o2verlap study. Chronic obstr pulm dis. 2022 jul 29;9(3):394-412. Doi: 10.15326/jcopdf.2022.0293. Pmid: 35797447; pmcid: pmc9448010.casaburi r, merrill d, dolmage t, garcia-aymerich j, fageras m, goldstein r, harding g, kline leidy n, maltais f, o'donnell d, porszasz j, puente-maestu l, rennard s, sciurba f, spruit ma, tal-singer r, tetzlaff k, van't hul a, yu r, hamilton a. Endurance time during constant work rate cycle ergometry in Copd: development of an integrated database from interventional studies. Chronic obstr pulm dis. 2022 oct 26;9(4):520-537. Doi: 10.15326/jcopdf.2022.0331. Pmid: 36066494; pmcid: pmc9718584.tal-singer r, walsh l, deuby t, shaughnessy a, hoth kf, gascon v, hintringer s, hass n, winders t, morgan l, thomashow b, mannino dm. Tobacco industry ownership of pharmaceutical companies: an international survey of people with respiratory disease. Thorax. 2022 aug 15:thoraxjnl-2022-219142. Doi: 10.1136/thorax-2022-219142. Epub ahead of print. Pmid: 35970539.mannino dm, tal-singer r. long-term trends of Copd mortality: gaps and opportunities. Respirology. 2022 nov;27(11):914-915. Doi: 10.1111/resp.14334. Epub 2022 aug 2. Pmid: 35916275.sullivan j, pasquale c, clark b, malanga e, martinez s, mannino d, stepnowsky c. outcomes important to patients diagnosed with both Copd and sleep apnea: findings from the o2verlap study focus groups. Chronic obstr pulm dis. 2022 jan 27;9(1):45-54. Doi: 10.15326/jcopdf.2021.0268. Pmid: 34915602; pmcid: pmc8893966. Ekstrm m, mannino d. research race-specific reference values and lung function impairment, breathlessness and prognosis: analysis of nhanes 2007-2012. Respir res. 2022 oct 1;23(1):271. Doi: 10.1186/s12931-022-02194-4. Erratum in: respir res. 2023 feb 3;24(1):41. Pmid: 36182912; pmcid: pmc9526909. Moll m, hobbs bd, menon a, ghosh aj, putman rk, hino t, hata a, silverman ek, quackenbush j, castaldi pj, hersh cp, mcgeachie mj, sin dd, tal-singer r, nishino m, hatabu h, hunninghake gm, cho mh. Blood gene expression risk profiles and interstitial lung abnormalities: copdgene and eclipse cohort studies. Respir res. 2022 jun 17;23(1):157. Doi: 10.1186/s12931-022-02077-8. Pmid: 35715807; pmcid: pmc9204872.bhutani m, price db, winders ta, worth h, gruffydd-jones k, tal-singer r, correia-de-sousa j, dransfield mt, pech r, stolz d, hurst jr. quality standard position statements for health system policy changes in diagnosis and management of Copd: a global perspective. Adv ther. 2022 jun;39(6):2302-2322. Doi: 10.1007/s12325-022-02137-x. Epub 2022 apr 28. Pmid: 35482251; pmcid: pmc9047462.casaburi r, merrill dd, harding g, leidy nk, rossiter hb, tal-singer r, hamilton a; cbqc constant work rate exercise working group. A conceptual framework for use of increased endurance time during constant work rate cycle ergometry as a patient-focused meaningful outcome in Copd clinical trials. Chronic obstr pulm dis. 2022 apr 29;9(2):252-265. Doi: 10.15326/jcopdf.2021.0258. Pmid: 35018752; pmcid: pmc9166337.martinez fj, agusti a, celli br, han mk, allinson jp, bhatt sp, calverley p, chotirmall sh, chowdhury b, darken p, da silva ca, donaldson g, dorinsky p, dransfield m, faner r, halpin dm, jones p, krishnan ja, locantore n, martinez fd, mullerova h, price d, rabe kf, reisner c, singh d, vestbo j, vogelmeier cf, wise ra, tal-singer r, wedzicha ja. Treatment trials in young patients with chronic obstructive pulmonary disease and pre-chronic obstructive pulmonary disease patients: time to move forward. Am j respir crit care med. 2022 feb 1;205(3):275-287. Doi: 10.1164/rccm.202107-1663so. Pmid: 34672872; pmcid: pmc8886994.