b'EXECUTIVE SUMMARYSince the inception of the Lymphatic Education and Research Network (LE&RN) in 1998 (renamed from Lymphatic Research Foundation), substantial progress has been made in raising awareness about lymphedema (LE). However, there is still a lack of comprehensive public health data informing the impact of lymphedema on patients, families, and society. Additional research is needed to gain a deeper understanding of the diseases effects on both physical and mental health, as well as its impact on healthcare costs in the U.S. This document helps to collect and coalesce the ongoing efforts to classify and treat lymphatic diseases (LD) appropriately. INTRODUCTION including characterization of the clinical experiencesof those in the United States living with lymphedema, Background stratified by lymphedema subtype (primary or secondary lymphedema), identification of patternsLymphedema (LE) is a chronic disease with no cure of symptom onset, diagnosis, education, and and a limited number of effective treatments.treatment in cancer-related and non-cancer-related Lymphedema, even when treated, leads to variouslymphedema patients and, further, identifying the debilitating symptoms, signs, and complications. impact of lymphedema on patients quality of lifeThe lymphatic system, essential for maintaining and functional status.health, is one of the only body systems that still lacks biomarkers to identify its diseases, and there are noWhat Is Lymphedema?relevant clinical interventions to measure lymphaticAbbreviation: (LE)function. Additionally, once lymphatic dysfunction Pronunciation: limfuhdeemuhis identified, there exist very few appropriate International Variation: lymphoedematherapy options.Lymphedema is a form of swelling;In 2021, the Lymphatic Education & Research Networkit develops within the body when the (LE&RN) received a federal grant, Expanding thelymphatic system is not functioning National Approach to Chronic Disease Education andnormally. It may occur regionally,Awareness, from the Centers for Disease Control andfor example, in the leg, arm, headPrevention (CDC) with the sole purpose of expandingand neck, abdomen, groin, or pelvis, and advancing the CDCs work on education, or can be present diffusely acrossoutreach, and public awareness for those living withLeft leg many anatomic regions. Lymphedema lymphedema. Why? Because the body of evidencelymphedema is a chronic disease with no cureabout lymphedema is sparse and inadequate. and few treatment interventions, rendering it To accomplish these goals, several strategies werepermanent and progressive. The swelling of undertaken, including 1) the development of alymphedema almost always leads to a host of other 23-question survey to address data gaps, with thedebilitating symptoms and complications, including ultimate collection and analysis of this data; 2) thepain, recurrent and sometimes life-threateningdistribution of the insights acquired from the data;skin infections that require emergent care and 3) educational activities that can support bothhospitalization, impaired movement, profound healthcare professionals and public awareness; and psychosocial and functional derangements, and4) hosting forums with researchers to discuss currenta lifetime of suffering. Lymphedema is further and future needs in lymphatic research.subcategorized on whether it is based upon inherited characteristics or results from an acquired injury or LE&RNs National Indicator Report on Cancer-Relatedtraumatic disruption of the integrity of a previously Lymphedema (LE)provides information on the currentfunctional lymphatic system. status of lymphedema comprehension and awareness, |National Indicator Report on Cancer-Related Lymphedema (LE)|3'