COPD FOUNDATION INC

RESEARCH & MEDICALTHE COPD FOUNDATION RESEARCH TEAM ENGAGES WITH MULTIPLE INDIVIDUALS AND ORGANIZATIONS TO SUPPORT RESEARCH STUDIES AND CLINICAL TRIALS. THESE STUDIES FOCUS ON A WIDE RANGE OF TOPICS THAT ALIGN WITH THE FOUNDATION MISSION. THESE INCLUDE PATIENT SYMPTOM TREATMENT, VIRTUAL COPD MANAGEMENT TOOLS, PATIENT FEEDBACK ON SCREENING TOOLS, AND DEVELOPMENT OF NEW THERAPIES AND MEDICAL DEVICES TO ADDRESS UNMET NEEDS. THE COPD FOUNDATION RESEARCH TEAM ALSO PARTICIPATED IN SEVERAL ACTIVITIES THAT ARE TARGETING PEOPLE WITH EARLY COPD WITH THE AIM TO DEVELOP APPROACHES THAT CAN BE USED TO SLOW DISEASE PROGRESSION THESE INCLUDE AN AMERICAN THORACIC SOCIETY EARLY DISEASE WORKING GROUP, CO-CHAIRED BY THE COPD FOUNDATION AND DISCUSSIONS RELATED TO THE DESIGN AND CONDUCT OF CLINICAL TRIALS IN PATIENTS WITH EARLY DISEASE.THE COPD FOUNDATION IS CONTINUING THE WORK OF THE PATIENT INSPIRED VALIDATION OF OUTCOME TOOLS (PIVOT) PROJECT. PIVOT WAS ESTABLISHED TO BE A DRIVING FORCE FOR INTEGRATING THE PATIENT AND THE PATIENT VOICE INTO CLINICAL OUTCOME MEASUREMENT VALIDATION AND SELECTION FOR USE IN CHRONIC LUNG DISEASE RESEARCH AND CLINICAL TRIALS. THE PIVOT PROJECT HAS PRODUCED TWO MANUSCRIPTS, ONE TO DESCRIBE THE OBJECTIVES OF PIVOT AND A SECOND REPORTING THE FIRST RESULTS OF ANALYSIS OF WHAT MATTERS MOST TO PATIENTS WITH COPD. OVER THE NEXT YEAR THE PIVOT TEAM WILL CONDUCT A SURVEY OF COPD PATIENTS TO BETTER UNDERSTAND THE HETEROGENEITY IN HOW COPD PATIENTS EXPERIENCE THEIR DISEASE IN THEIR DAILY LIVES AND WHAT IS MOST IMPORTANT TO THEM IN TERMS OF UNMET NEEDS. IN THE COMING YEAR, THE PIVOT TEAM WILL ALSO BEGIN SIMILAR WORK IN NON-CYSTIC FIBROSIS BRONCHIECTASIS.THE COPD FOUNDATION CONTINUES TO PRIORITIZE THE DEVELOPMENT OF ITS PATIENT POWERED RESEARCH NETWORK OR PPRN, A NETWORK IN WHICH PATIENTS ARE RECRUITED TO SHARE THEIR HEALTH INFORMATION AND DISEASE IMPACT. PATIENT PROVIDED HEALTH INFORMATION IS STORED IN A SECURE DATABASE AND IS USED TO SUPPORT PROJECTS WHERE PATIENT INPUT IS NEEDED. THE PPRN IS CURRENTLY BEING USED TO SUPPORT MULTIPLE ONGOING RESEARCH STUDIES AND CLINICAL TRIAL ACTIVITIES.

BRONCHIECTASIS & NTM ASSOCIATIONTHE COPD FOUNDATION WAS APPROVED TO DO BUSINESS AS THE BRONCHIECTASIS AND NTM ASSOCIATION. WITH THIS APPROVAL, WE EMBARKED ON A REBRANDING EFFORT, ENSURING OUR COMMITMENT AND DEDICATION TO THIS PATIENT COMMUNITY.WE HAD ANOTHER SUCCESSFUL WORLD BRONCHIECTASIS DAY CAMPAIGN, REACHING OVER 2 MILLION PEOPLE. THE CAMPAIGN ALLOWED US TO BRING TOGETHER NEARLY 20 PATIENT ADVOCACY ORGANIZATIONS AND PROFESSIONAL SOCIETIES TO COLLABORATE IN SPREADING AWARENESS AND EDUCATION ON BRONCHIECTASIS.THE GOAL OF THE BRONCHIECTASIS AND NTM RESEARCH REGISTRY 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. OVER THE COURSE OF THE YEAR, THE REGISTRY CONTINUED ENROLLING AND COLLECTING LONGITUDINAL DATA ON PARTICIPANTS, REACHING OVER 8,000 PARTICIPANTS AND UP TO 16 YEARS OF DATA ON SOME PARTICIPANTS. SEVERAL REGISTRY ABSTRACTS WERE PRESENTED AT INTERNATIONAL CONFERENCES AND MANUSCRIPTS WERE PUBLISHED AS A RESULT OF THE REGISTRY DATA COLLECTION. IN ADDITION, THE REGISTRY WAS UTILIZED TO FACILITATE RECRUITMENT INTO MAJOR CLINICAL TRIALS IN THIS SPACE.THE BRONCHIECTASIS AND NTM CARE CENTER NETWORK'S MISSION IS TO REDUCE THE TIME TO DIAGNOSIS AND SUPPORT HIGH QUALITY CARE FOR THIS PATIENT POPULATION. THE CARE CENTER NETWORK SUCCESSFULLY ONBOARDED 33 CENTERS AND CONTINUED PLANNING FOR THE NEXT REQUEST FOR APPLICATIONS.