b'Life-threatening complications from lymphedema,3. An agreement analysis with a cohort of enrolleesincluding shortness of breath, cardiac dysfunction,who attended symposia hosted by LE&RN and and sepsis from complications such as cellulitis andself-identified as living with lymphedemaother infections The Objectives Suffering with a disfigurement that translates into 1. Characterize the clinical experiences of lymphedema disability, a decrease in quality of life, morbidity and potential mortality, loss of person-years of work,patients in the U.S. by lymphedema subtype (cancer attendant complications, repeated hospitalizations,or non-cancer-related, respectively)and rising healthcare costs 2. Identify patterns of symptom onset, diagnosis,Whats New? education, and treatment in cancer-related and non-cancer-related lymphedema patientsImportant developments are taking place in basic 3. Identify the self-described impact of lymphedema biological science, and early investigators are more engaged. on patients quality of life and functional status4. Disseminate this studys patient-driven dataNew diagnostics in the form of molecular, genetic,and humoral factors and imaging techniques areanalysis to healthcare providers within the U.S.,becoming available.with a goal to invigorate and expand the impetus Therapeutics focusing on lymphatic function are for lymphedema diagnosis and treatment now being created.Data Sources Both in the lymphatic community and all areas ofIn 2016, LE&RN launched The International healthcare, the importance of educational reform isLymphatic Disease and Lymphedema Patient Registry mounting as patient and research advocacy groups,& Biorepository, recently renamed the LE&RN Global like LE&RN, lobby for more research dollars.Registry for Lymphatic Diseases, a 500-item online Summary survey geared for self-identified and formally diagnosed patients living with lymphatic diseases Objective: LE&RNs Lymphedema Report Card aims(LD) inclusive of primary and secondary lymphedema to provide insights into the status of lymphedemaThe registry collects longitudinal data annually and isdiagnosis, treatment, and awareness in the U.S. available as an investigative tool for the lymphatic Scope: This report covers the clinical experiences ofresearch community lymphedema patients, patterns of symptom onset,Data variables include patient demographics, specificdiagnosis, education, treatment, and the impact ofdiagnoses, past and current medical and surgical lymphedema on quality of life. history, family and social history, as well as allergies, medications, treatments, and socioeconomic and quality of life measuresThe data from the registry has been the basis for thedesign of this study and its statistical analysisSTUDY METHODOLOGY SamplingThe report focused on registry enrollees who self- The Gathered FACTS identify as individuals living with lymphedemaAs an awardee of the CDCs grant funding mechanismAnalysisto expand and advance the National Center forThe data from the registry formed the basis for theChronic Disease Prevention and Health Promotionsstudys design and statistical analysiswork, Lymphatic Education & Research Network (LE&RN) conducted a three-part study including: Survey Tool Development1. A detailed analysis of the LE&RN Global Registry INTERACTIONS COHORT for Lymphatic Diseases (https://lymphaticnetwork. A 23-item online survey tool was developed org/ldregistry) focused on lymphedema (LE), enrollees (N=529) specifically for enrollees in the registry who self-identified as patients living with lymphedema2. An anonymous, social media-based analysis ofIt was further distributed and made publicly availablepatients living with lymphedema within the U.S. through the Stanford University School of Medicine This was a subcohort analysis focused on healthcareand LE&RNinteractions (N=2153)|National Indicator Report on Cancer-Related Lymphedema (LE)|5'