PULMONARY FIBROSIS FOUNDATION

PFF REGISTRY: THE PFF REGISTRY PROGRAM RECORDED A TOTAL REVENUE OF $957,196, ENCOMPASSING CONTRIBUTIONS AND SPONSORSHIPS AMOUNTING TO $273,150 AND PROGRAM SERVICE REVENUE TOTALING $684,045. THIS INITIATIVE SERVES AS A COLLABORATIVE RESEARCH ENDEAVOR, UNITING VARIOUS STAKEHOLDERS SUCH AS PATIENTS, CAREGIVERS, FAMILY MEMBERS, HEALTHCARE PROVIDERS, AND RESEARCHERS WITH THE GOAL OF ADVANCING RESEARCH AND ENHANCING THE QUALITY OF LIFE FOR INDIVIDUALS AFFECTED BY PULMONARY FIBROSIS (PF) AND INTERSTITIAL LUNG DISEASE (ILD).THE GOALS OF THE REGISTRY INCLUDE:1. ESTABLISH A COMPREHENSIVE INFORMATION SOURCE TO ASSIST RESEARCHERS IN ADDRESSING DIAGNOSTIC, TREATMENT, AND POTENTIAL CURE-RELATED QUERIES.2. PROVIDE A DATASET ENABLING RESEARCHERS TO ENHANCE THE QUALITY OF CARE IN US-BASED MEDICAL PRACTICES.3. UTILIZE INFORMATION TO SUPPORT LEGISLATIVE AND ADVOCACY INITIATIVES.4. ENGAGE THE PF AND ILD COMMUNITIES.THE REGISTRY INCLUDES TWO DISTINCT REGISTRIES:1. THE PFF PATIENT REGISTRY GATHERED PHYSICIAN-REPORTED MEDICAL INFORMATION TWICE A YEAR FROM OVER 2000 PATIENTS RECEIVING CARE AT 42 PARTICIPATING PFF CARE CENTERS ACROSS THE UNITED STATES FROM 2016 TO 2022.2. THE PFF COMMUNITY REGISTRY LAUNCHED IN JULY 2022 AND RELIES ON SELF-REPORTED INFORMATION SUBMITTED BY PATIENTS, LUNG TRANSPLANT RECIPIENTS DIAGNOSED WITH PF OR ILD, AS WELL AS THEIR CAREGIVERS AND BIOLOGICAL FAMILY MEMBERS, NEARLY 3,000 INDIVIDUALS HAVE ENROLLED TO DATE.TOGETHER, THESE REGISTRIES COMPILE DATA IN AN ELECTRONIC DATABASE COVERING PATIENT DIAGNOSIS, MEDICAL HISTORY, TREATMENT, QUALITY OF LIFE, AS WELL AS MEDICAL AND FAMILY HISTORY FROM CAREGIVERS AND FAMILY MEMBERS. THE COLLECTED DATA ARE ANONYMIZED AND INDEPENDENTLY MANAGED BY A DATA COORDINATING CENTER. FURTHERMORE, THE PATIENT REGISTRY OBTAINED BLOOD SAMPLES WITH PATIENT CONSENT, WHICH WERE THEN ANONYMIZED AND INDEPENDENTLY MANAGED BY A MEDICAL SPECIMEN STORAGE FACILITY ASSOCIATED WITH THE DATA COORDINATING CENTER.CURRENTLY, OVER 60 RESEARCH PROJECTS HAVE BEEN COMPLETED OR ARE UNDERWAY USING CLINICAL DATA AND SOME UTILIZED BIOSAMPLES AND/OR HRCT SCANS FROM THE PATIENT REGISTRY. MOST OF THESE STUDIES ARE CLINICAL IN NATURE, BUT BASIC/TRANSLATIONAL PROJECTS AND PATIENT-CENTERED RESEARCH ALSO ARE WELL REPRESENTED.

EDUCATION: TOTAL REVENUE RECOGNIZED FOR EDUCATIONAL PROGRAMS WAS $548,062.THE PULMONARY FIBROSIS FOUNDATION (PFF) IS COMMITTED TO PROVIDING QUALITY DISEASE EDUCATION TO THE PULMONARY FIBROSIS (PF) AND INTERSTITIAL LUNG DISEASE (ILD) COMMUNITY. THE PFF STRIVES TO PROVIDE PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND HEALTHCARE PROVIDERS WITH THE RESOURCES NECESSARY TO MORE FULLY UNDERSTAND PF AND ITS IMPACT AS WELL AS PROVIDE PATIENTS WITH THE TOOLS NECESSARY TO LIVE WITH THE DISEASE AND IMPROVE THEIR QUALITY OF LIFE.THE PFF DISEASE EDUCATION WEBINAR SERIES HAS SERVED AS AN ESSENTIAL PROGRAM TO ADVANCE OUR MISSION OF EDUCATING THE PF AND ILD COMMUNITY. THE WEBINAR SERIES PROVIDES A FREE, CONVENIENT WAY FOR PATIENTS, CAREGIVERS, AND FAMILIES TO LEARN FROM AND CONNECT WITH PF SPECIALISTS ON A VARIETY OF IMPORTANT TOPICS. DURING FY24-25, THE PFF DISEASE EDUCATION WEBINAR SERIES INCLUDED EIGHT WEBINARS. THE PFF DISEASE EDUCATION WEBINAR SERIES TOPICS INCLUDED: LUNG TRANSPLANT, EXPOSURES, DIAGNOSIS, PULMONARY FUNCTION TESTS, NUTRITION, RESEARCH, AUTOIMMUNE DISEASES, AND MORE. THE PFF DISEASE EDUCATION WEBINAR SERIES HOSTED OVER 1,500 LIVE ATTENDEES. WEBINARS ARE RECORDED AND AVAILABLE FOR VIEWING ON BOTH THE PULMONARY FIBROSIS FOUNDATION WEBSITE AND YOUTUBE CHANNEL. WEBINARS FROM THE PFF DISEASE EDUCATION WEBINAR SERIES FROM THIS TIMEFRAME HAVE AMASSED OVER 10,000 VIEWS ON YOUTUBE ALONE. IN ADDITION TO THE PFF DISEASE EDUCATION WEBINAR SERIES, THE FOUNDATION HAS DEVELOPED A LIBRARY OF DISEASE EDUCATION MATERIALS FOR PULMONARY FIBROSIS PATIENTS, CAREGIVERS, FAMILY MEMBERS, AND FRIENDS. DURING FY24-25, THE PULMONARY FIBROSIS FOUNDATION DEVELOPED THE FOLLOWING MATERIALS: TRANSLATION OF "COMMON HEALTH RESEARCH TERMS: A GUIDE FOR PEOPLE LIVING WITH PULMONARY FIBROSIS" IN SPANISH, "LUNG BIOPSY FOR INTERSTITIAL LUNG DISEASE" FACT SHEET, "GRAPHIC ILLUSTRATION OF LIQUID OXYGEN", AND "RECURSOS DE FIBROSIS PULMONAR" RESOURCE PAGE OF ALL EDUCATIONAL MATERIALS TRANSLATED INTO SPANISH.