COPD FOUNDATION INC
3300 PONCE DE LEON BLVD, MIAMI, FL 33134 www.copdfoundation.org

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Organizations Filed Purposes: THE COPD FOUNDATION WAS ESTABLISHED TO SPEED INNOVATIONS WHICH WILL MAKE TREATMENTS MORE EFFECTIVE AND AFFORDABLE, UNDERTAKE INITIATIVES THAT RESULT IN EXPANDED SERVICES FOR COPD PATIENTS, AND IMPROVE THE LIVES OF PATIENTS WITH COPD THROUGH EDUCATION AND RESEARCH THAT WILL LEAD TO PREVENTION AND SOMEDAY A CURE FOR THE DISEASE

RESEARCH THE COPD360 UNIQUE RESEARCH PLATFORM INCLUDES MULTIPLE ELEMENTS SUCH AS TWO PATIENT REGISTRIES, COPD PATIENT POWERED RESEARCH NETWORK (COPD PPRN) AND BRONCHIECTASIS AND NTM RESEARCH REGISTRY (BRR), AND THE RECENTLY LAUNCHED DIGITAL HEALTH AND THERAPEUTICS DEVELOPMENT NETWORK (COPD360NET). ALL ARE POWERED BY A SECURE CLOUD-BASED ANALYTICAL INFRASTRUCTURE THAT SUPPORTS THE GROWTH OF THE COPD FOUNDATION'S PATIENT CENTERED RESEARCH ACTIVITIES. COPD PATIENT-POWERED RESEARCH NETWORK (COPD PPRN) THE COPD PATIENT-POWERED RESEARCH NETWORK (COPD PPRN) IS A PATIENT REGISTRY OF OVER 8000 INDIVIDUALS WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE OR WHO MAY BE AT RISK FOR COPD WHO HAVE AGREED TO SHARE THEIR HEALTH INFORMATION AND PARTICIPATE IN RESEARCH. IT IS UNIQUELY OVERSEEN BY A PATIENT-LED GOVERNING BOARD AND IS SLATED TO BE THE LARGEST RESEARCH REGISTRY FOR COPD.PARTICIPANTS CREATE AN ACCOUNT ON A SECURE PLATFORM WHERE THEY PROVIDE DIGITAL CONSENT, AGREE TO COMPLETE SURVEYS AND TO LINK THEIR ELECTRONIC HEALTH RECORD TO THE PPRN DATABASE. BY BECOMING PART OF THE PPRN, PARTICIPANTS AGREE TO BE CONTACTED ABOUT STUDY OPPORTUNITIES AND RETAIN ACCESS TO WEB PORTALS WITH PERSONALIZED DASHBOARDS WHERE THEY CAN ACCESS THEIR INFORMED CONSENT, TAKE SURVEYS, RECEIVE NOTIFICATION OF AVAILABLE STUDIES THEY CAN ENROLL IN, VIEW REPORTS COMPARING THEM WITH OTHER PARTICIPANTS AND ACCESS THE LATEST COPD FOUNDATION RESOURCES. THIS PATIENT-CENTERED APPROACH SPEEDS INNOVATION AND FACILITATE ACCESS/RECRUITMENT TO CLINICAL TRIALS THAT MAY ULTIMATELY RESULT IN NOVEL THERAPIES. BRONCHIECTASIS AND NTM RESEARCH REGISTRY (BRR) FOUNDED IN 2007, THE BRONCHIECTASIS AND NTM RESEARCH REGISTRY IS A CLINICAL REGISTRY OF PATIENTS WITH NON-CF BRONCHIECTASIS AND/OR NONTUBERCULOSIS MYCOBACTERIA (NTM) LUNG DISEASE. THE BRR INCLUDES MORE THAN 3,500 PARTICIPANTS IN 17 CLINICAL SITES. IN SOME CASES THERE IS UP TO 13 YEARS OF LONGITUDINAL PHYSICIAN-REPORTED DATA THAT IS USEFUL FOR IDENTIFYING INDIVIDUALS RESEARCH STUDIES AND CLINICAL TRIALS. WE ARE IN THE PROCESS OF A REGISTRY EXPANSION DURING WHICH WE WILL ADD 5 NEW SITES, REACH 5,000 ENROLLED PARTICIPANTS BY MAY OF 2022, AND CONTINUE LONGITUDINAL FOLLOW-UP OF PARTICIPANTS IN THE REGISTRY. THE COPD FOUNDATION'S BRR HAS BEEN VERY SUCCESSFUL AND HAS SERVED AS A MODEL FOR MULTIPLE BRONCHIECTASIS REGISTRIES OUTSIDE OF THE UNITED STATES. THE BRR HAS BEEN USED TO ASSIST WITH RECRUITMENT INTO MAJOR RESEARCH STUDIES AND CLINICAL TRIALS, INCLUDING THOSE TESTING IMPORTANT THERAPIES FOR THE TREATMENT OF NON-CF BRONCHIECTASIS AND NTM LUNG DISEASE. IT HAS ALSO BEEN USED FOR EDUCATIONAL PURPOSES. DIGITAL HEALTH AND THERAPEUTICS ACCELERATOR NETWORK (COPD360NET)THE COPD FOUNDATION'S DIGITAL HEALTH AND THERAPEUTICS COPD360NET WAS ESTABLISHED IN 2020 AND IS DESIGNED TO FACILITATE, REVIEW, AND EXPEDITE CLINICAL TRIALS FOR NEW THERAPIES AND DIGITAL HEALTH TOOLS. IN ADDITION, COPD360NET IS FOCUSED ON IMPLEMENTATION SCIENCE FACILITATING DISCOVERY TO DELIVERY. COPD360NET IS COMPRISED OF CORE COPD FOUNDATION ACCREDITED CARE CENTERS, EXPERTS IN THE FIELD OF COPD AND RELATED LUNG DISEASE, AND RELEVANT SUBJECT MATTER EXPERTS (INCLUDING A HEALTH ECONOMIST ASSESSING PATIENT PREFERENCES AND VALUATION OF THE COPDF PIPELINE, A PSYCHOSOCIAL EXPERT STUDYING COGNITIVE IMPAIRMENT IN CHRONIC DISEASE, AND PRIMARY CARE PHYSICIANS). THE GOALS FOR COPD360NET ARE TO: ACCELERATE THE ADOPTION AND REIMBURSEMENT OF DIGITAL HEALTH TOOLS ACCELERATE THE DEVELOPMENT OF NOVEL THERAPIES, INCLUDING PROMISING REPURPOSED OR SHELVED MOLECULES INNOVATE CLINICAL TRIAL DESIGNS: TARGET SPECIFIC COPD SUB POPULATIONS, USE NEW ENDPOINTS, AND TAKE A MOSTLY REMOTE DIGITAL TRIALS APPROACH TRANSLATE TRIAL FINDINGS AND PATIENT PREFERENCE INTO PRACTICE TO INFORM OPTIMAL CARE DELIVERY AND REIMBURSEMENT. COVID-19 RESEARCH IN RESPONSE TO THE COVID-19 PANDEMIC, IN 2020, THE COPD FOUNDATION CONDUCTED 3 RESEARCH SURVEYS DESIGNED TO RAPIDLY ACCESS INFORMATION FROM PATIENTS AND CAREGIVERS ON THE IMPACT OF COVID-19. IN EACH SURVEY, PARTICIPANTS WERE ASKED A SERIES OF QUESTIONS RELATED TO COVID-19 DIAGNOSIS AND COVID-19 RELATED CONCERNS. THE CONTINUED COLLECTION OF THIS TYPE OF INFORMATION ALLOWS THE FOUNDATION TO BETTER UNDERSTAND THE IMPACT OF ONGOING PANDEMIC ON OUR COMMUNITY AND PRIORITIZE EDUCATION AND ADVOCACY PROGRAMS THAT ADDRESS ITS NEEDS SUCH AS ACCESS TO OXYGEN, NEBULIZED THERAPIES, SUPERVISED EXERCISE, PULMONARY REHABILITATION, AND PROGRAMS THAT ADDRESS STRESS AND ISOLATION. MULTIPLE COVID-19 RELATED SURVEYS TARGETING PATIENTS AND CAREGIVERS THAT WERE CONDUCTED BY THE COPD FOUNDATION AND ITS MEDICAL AND SCIENTIFIC PARTNERS HAVE ALL BEEN PUBLISHED. THEY HAVE ALSO BEEN SHARED WITH THE COMMUNITY IN BLOG POSTS AND INFORMING WEBINARS.TAL-SINGER R, YAWN B, WISE B, THOMASHOW B, BOYCE DM. THE COPD FOUNDATION CORONAVIRUS DISEASE 2019 INTERNATIONAL MEDICAL EXPERTS SURVEY: RESULTS. CHRONIC OBSTR PULM DIS. 2020; 7(3): 139-146.BOYCE DM, THOMASHOW BM, SULLIVAN J, TAL-SINGER R. NEW ADOPTERS OF TELEMEDICINE DURING THE CORONAVIRUS-19 PANDEMIC IN RESPONDENTS TO AN ONLINE COMMUNITY SURVEY: THE CASE FOR ACCESS TO REMOTE MANAGEMENT TOOLS FOR INDIVIDUALS WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE. CHRONIC OBSTR PULM DIS. 2020 DEC 8. DOI: 10.15326/JCOPDF.2020.0181. EPUB AHEAD OF PRINT. PMID: 33291190.SURVEY #1HTTPS://WWW.COPDFOUNDATION.ORG/COPD360SOCIAL/COMMUNITY/COPD-DIGEST/ARTICLE/1566/EXPLORING-THE-COPD-PATIENT-AND-CAREGIVERS-EXPERIENCE-WITH-COVID-19-THROUGH-SURV.ASPXSURVEY #2: COPD HIGHLIGHTS: HTTPS://WWW.COPDFOUNDATION.ORG/COPD360SOCIAL/COMMUNITY/COPD-DIGEST/ARTICLE/1586/HIGHLIGHTS-FROM-COVID-19-SURVEY-2-PANDEMIC-IMPACT-ON-THE-COPD-COMMUNITY.ASPXBRONCH/NTM HIGHLIGHTS: HTTPS://WWW.BRONCHIECTASISANDNTMINITIATIVE.ORG/BRONCHANDNTM360SOCIAL/COMMUNITY-DISCUSSIONS/BLOG/ARTICLE/121/HIGHLIGHTS-FROM-COVID-19-SURVEY-2-PANDEMIC-IMPACT-ON-THE-BRONCHIECTASIS-AND-NTMSURVEY #3HTTPS://WWW.COPDFOUNDATION.ORG/COPD360SOCIAL/COMMUNITY/COPD-DIGEST/ARTICLE/1609/COVID-19-AND-THE-CHRONIC-LUNG-CONDITIONS-COMMUNITY-HOW-ARE-WE-DOING-AFTER-6-MON.ASPXTHE COPD FOUNDATION NEBULIZER CONSORTIUM (CNC WAS LAUNCHED IN JAN 2020 AS A RESPONSE TO COVID-19 CONCERNS. IT AIMS TO ADDRESS THE UNIQUE CHALLENGES SURROUNDING AEROSOL GENERATING PROCEDURES DURING THE COVID-19 PANDEMIC AND TO IMPROVE THE UNDERSTANDING OF ANY INFECTION RISKS THAT MAY BE ASSOCIATED WITH THE ADMINISTRATION OF NEBULIZED THERAPIES AND TO DEVELOP SOLUTIONS THAT ENSURE THE SAFETY OF PATIENTS, CAREGIVERS, AND HEALTH CARE PROVIDERS.

CARE DELIVERYCOPD FOUNDATION'S CARE DELIVERY PROGRAMS PROVIDE EDUCATIONAL OPPORTUNITIES FOR ALL PEOPLE IMPACTED BY COPD OR RELATED LUNG CONDITIONS INCLUDING PATIENTS, FAMILY MEMBERS, HEALTH CARE PROVIDERS OR OTHERS AFFECTED BY THESE CONDITIONS. AT THE CORE OF THE FOUNDATION'S CARE DELIVERY EFFORTS IS THE COPD360SOCIAL PLATFORM, WHERE NEARLY 50,000 MEMBERS OF OUR COMMUNITY ACCESS EDUCATIONAL RESOURCES, SUPPORT AND CONNECT WITH EACH OTHER. SPECIFIC EFFORTS IN CARE DELIVERY INCLUDE:IN JULY OF 2019, THE COPD FOUNDATION HELD OUR THIRD READMISSIONS REDUCTION INSTITUTE MEETING IN DAVIS, CA. THE GOAL OF THESE INSTITUTES IS TO ENABLE COLLECTIVE EFFORTS BY HEALTH CARE PROVIDERS IN A PARTICULAR COMMUNITY ON TO DEVELOP AND IMPLEMENT STRATEGIES TO REDUCE HOSPITAL READMISSIONS.THE NEBULIZER EDUCATION AND VIDEO SERIES PROVIDED ESSENTIAL INFORMATION ON PROPER USE AND MAINTENANCE OF NEBULIZERS. THROUGHOUT 2020, THE COPD FOUNDATION WAS COMMITTED TO EDUCATING AND INFORMING OUR COMMUNITY ABOUT THE RISKS OF COVID-19 AND THE STEPS THEY COULD TAKE TO PROTECT THEMSELVES. THIS INCLUDED A DEDICATED WEBPAGE, WEBINARS, FACEBOOK LIVE EVENT, VIDEOS, FAQS, AND BLOG POSTS ON MATTERS OF INTEREST TO OUR COMMUNITY.IN COLLABORATION WITH AMERICAN COLLEGE OF CHEST PHYSICIANS, WE CONDUCTED SURVEYS OF PATIENTS AND HEALTH CARE PROVIDERS TO ANALYZE ATTITUDES ABOUT COPD EXACERBATIONS AND WHAT COULD BE DONE TO IMPROVE COMMUNICATION RELATED TO EXACERBATIONS. WE SAW SIGNIFICANT DIFFERENCES IN HOW EACH GROUP PERCEIVED THE LEVEL OF COMMUNICATION, DEMONSTRATING A NEED FOR TRAINING AND EDUCATION TO IMPROVE THAT INTERACTION.THE HARMONICAS FOR HEALTH (H4H) PROGRAM CONTINUES TO GROW. THROUGH THIS PROGRAM, INDIVIDUALS CAN DEVELOP STRONG BREATHING SKILLS AND A GENERAL SENSE OF WELL-BEING WHILE PLAYING THE HARMONICA. THE PROGRAM ALSO SERVES AS AN AVENUE FOR THOSE STRUGGLING WITH COPD TO RECEIVE ENCOURAGEMENT AND SUPPORT FROM OTHERS.WE CONTINUED UPDATING OUR COPD POCKET CONSULTANT GUIDE (PCG) APP AND IN NOVEMBER 2019, WE LAUNCHED A NEW PATIENT/CAREGIVER TRACK ON THE APP WHICH IS AVAILABLE FOR BOTH IOS AND ANDROID USERS. THE PRINTED COPD PCG WAS UPDATED IN 2020 AND IS NOW AVAILABLE FOR DISTRIBUTION. WE DEVELOPED AN EDUCATION PROGRAM ON NONTUBERCULOUS MYCOBACTERIAL (NTM) LUNG DISEASE AND HOW IT CAN IMPACT INDIVIDUALS LIVING WITH COPD AND BRONCHIECTASIS. THE PROJECT INCLUDED A RARE DISEASE DAY WEBINAR, TWO EDUCATIONAL VIDEOS WITH A MEDICAL PROFESSIONAL, AND A SERIES OF SIX BLOG POSTS.WE AUTHORED A SIX-BLOG SERIES DESIGNED TO INFORM THE COPD COMMUNITY ABOUT BRONCHIECTASIS AND HOW PEOPLE LIVING WITH COPD MAY BE AT RISK.ADDITIONALLY, WE HAVE OVER 200,000 UNIQUE WEBSITE VISITORS EACH MONTH SEEKING OUR RESOURCES.

COMMUNICATIONSTHE COPD FOUNDATION EMPHASIZES COMMUNICATION AS ONE OF ITS CORE ATTRIBUTES. THERE ARE MULTIPLE STAKEHOLDERS WITHIN OUR COMMUNITY, EACH EQUALLY VALUED. AS SUCH, WE HAVE EXPANDED AUDIENCE-SPECIFIC COMMUNICATIONS THROUGH OUR SOCIAL MEDIA CHANNELS FOCUSING FACEBOOK AND INSTAGRAM ON OUR PATIENT AND CAREGIVER COMMUNITY, AND LINKEDIN ON INDUSTRY AND HEALTHCARE PROFESSIONALS. WE PRODUCE SEVERAL DIGITAL NEWSLETTERS: PRAXIS IS FOR OUR HEALTH CARE AND SCIENCE COMMUNITY AND FACES OF COPD IS DIRECTED AT OUR PATIENT AND CAREGIVER CONSTITUENTS. OTHER NEWSLETTERS WERE CREATED FOR OUR BRONCHIECTASIS/NTM COMMUNITY AND FOR MEMBERS OF OUR STATE CAPTAINS PROGRAM.

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