| Gaps in the Field of Lymphatic Research | 2026–27 Update | 4 5. Epidemiologic and Longitudinal Data • Need for epidemiologic studies to realistically determine the incidence and prevalence of lymphatic diseases in the US (primary and secondary lymphedema, lipedema, vascular malformations and other rare lymphatic disorders). • We lack natural history studies for lymphatic diseases and require them for FDA clinical trials. • More comprehensive registries are needed with better collaboration across the lymphatic community to share and analyze the data. 6. Access to Care and Global Health • Rural and global health disparities in people living with lymphedema. • Impact of climate change on chronic edema/ lymphedema. • Remote education/telehealth interventions to support those living remotely and rural people living with lymphedema. 7. Standards for Outcomes Measures • Development of validated patient reported outcomes in lymphatic disease. • Development of validated clinical outcomes (i.e., radiologic measures). 8. Patient Advocates Emphasized These Gaps Data collected from the NIH 2022 Yet to Be Charted: Lymphatics in Health and Disease Research Workshop • Improved awareness and specialized training for medical staff to recognize, diagnose, and treat lymphatic diseases. • Improved imaging of lymphatic diseases. • Non-invasive diagnostics and emphasis placed on establishing lymphatic medicine as a discipline. • Need for more Centers of Excellence and need for more specialists. • Need for primary care givers to be more educated in lymphatic diseases. • Need for creative state-of-the-art surgical approaches. • Need for methods of “transition of care” from pediatric to adult vascular anomaly patients and specialty centers for pediatric and adult vascular anomaly patients. • Need a method to include psychosocial counseling for patients with lymphatic diseases that have been historically neglected. • Identify the barriers to the routine referral of at-risk people for lymphatic disease and/or lymphedema assessment, preventative exercises, self-management education, and treatment as needed across the lifespan. BASIC & TRANSLATIONAL SCIENCE GAPS Basic research is often overlooked in terms of the impact and significance it can have in the development of novel therapies for diseases. Many of the advancements in the fields of cancer, cardiovascular disease, and neurology, for example, have been made due to the efforts of researchers who investigated the basic biology of those systems. Funding for this type of research for lymphatics is of the utmost importance to advance the knowledge and treatment of lymphatic diseases and lymphedema. 1. The Developmental Origin of the Lymphatic System Including often neglected lymphatic muscle cells (where do lymphatic muscle cells originate in development?), contractile protein and ion channel expressions of lymphatics, and the regional differences. 2. Compendium of Lymphatic Biology and Physiology Create a compendium of lymphatic biology and physiology to better understand the basic physiology of normal lymphatic tissue so that we can understand genetic and anatomic variations. 3. Quantification of Lymphatic Function We lack an understanding of the pressures and flows in healthy and dysfunctional lymphatic networks. • Mechanisms that maintain vessel homeostasis and role in optimizing function. • Functional studies of human vessels, especially of healthy vessels. • Studies to better understand the extent to which lymphatic contractile and valve dysfunction result from, or contribute to, other pathologies. • Because it is technically difficult to study human lymphatic smooth muscle cells, this has resulted in relying on the study of lymphatic endothelial cells (LECs). We have a paucity of research on the diversity and function of lymphatic smooth muscle cells. This includes the developmental origin of lymphatic muscle cells, contractile protein and ion channel expressions of lymphatics, and the regional differences. • Further evaluation required to understand the consequences of having or not having a normal functioning thoracic duct. • Do primary lymphedema-causing genetic mutations affect lymphatic vessel contractility and permeability?
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