NHLBI helps launch the first NIH National Commission on Lymphatic Diseases

Effort could speed diagnostics, treatments for poorly understood conditions

Millions of people worldwide are estimated to suffer from lymphatic diseases but diagnosing and treating them is difficult, in part because a full understanding of the lymphatic system is lacking, researchers say. While there’s no cure for lymphatic diseases, the current research focus is on symptom management, preventing progression, and improving the quality of life for people affected by them.

With the aim of advancing research in this area, in December 2023, the National Heart, Lung, and Blood Institute (NHLBI) helped launch the first-ever National Commission on Lymphatic Diseases (NCLD). It was requested by the lymphatic community and assembled with support from across the National Institutes of Health (NIH) in response to a congressional directive to establish a national body to advance lymphatics research. NCLD’s purpose is to gather collective inputs that serve to identify gaps and opportunities in lymphatic science, spur research, and evaluate the clinical, policy, and educational roadblocks to improving the prevention, diagnosis, and treatment of lymphatic diseases.     

“The creation of this lymphatics commission is a gratifying and revolutionary step in this very important and relatively neglected field of research,” said Stanley G. Rockson, M.D., co-chair of the commission and a professor of lymphatic research and medicine at Stanford University in California. “This is not to say that lymphatic research has been completely ignored, but that not enough has been undertaken, and we haven’t been far-reaching enough in the work that we’re trying do.”   

“We hope that the establishment of the NCLD will give the field a dramatic boost in the arm so that we can ascend to a much better level of recognition surrounding healthcare and scientific research in lymphatics,” said Rockson, a cardiologist who has conducted lymphatics research for the past 30 years. “We want to lay the groundwork for better treatments, which are desperately needed.”

Selen Catania, Ph.D., a program officer in the Vascular Biology and Hypertension Branch of NHLBI’s Division of Cardiovascular Sciences who serves as the commission’s executive secretary, agrees that lymphatics needs more attention. “We look forward to enabling the work of NCLD as it embarks on its critical mission,” Catania said. “It will help identify long-standing knowledge gaps and challenges as we better understand how the lymphatic system functions in sickness and in health to offer hope to people living with these devastating diseases.”

The lymphatic system is a hard-to-detect, yet-to-be mapped network of vessels that run alongside the blood vessels. They carry lymph, a colorless, watery fluid containing disease-fighting cells and other materials that are filtered through lymph nodes and returned to the bloodstream. Originally thought of mostly as “the body’s waste removal system,” the lymphatic system was found to be essential in regulating lipid metabolism and fighting viruses, bacteria, and even cancer and dementia. 

Damage to lymphatic transport due to natural causes or induced by certain treatments can impair these beneficial functions and result in accumulation of fluid in the tissues, contributing to a painful condition known as lymphedema. It is just one of many lymphatic disorders affecting people worldwide.

The existence of the commission will help coordinate and enhance existing lymphatic research already being supported by the NIH, which has a multidisciplinary research portfolio spanning several institutes, all of which play a role in investigating the development, structure, and function of lymphatic vessels and organs. NIH research also explores genetic mutations and other conditions contributing to congenital and secondary lymphatic diseases (those resulting from injury or obstruction).

In addition, the NIH Human BioMolecular Atlas Program (HuBMAP),supported by the NIH Common Fund, aims to map healthy cells of the human body. HuBMAP is on tap to develop the first detailed maps of the lymphatic system.   

The NCLD numbers 15 members, including people who research, treat, or live with lymphatic diseases. Each member will serve a two-year term. The commission will meet four times a year, with the next meeting scheduled for April 2024. At the end of the two-year term, the commission will deliver a comprehensive report of its findings about lymphatics and the burden of these diseases in the United States. It will share these findings with the NHLBI Advisory Council, the NIH convening body, which will then consider the commission’s recommendations and carry them forward to other institutes at NIH and potentially to other federal government agencies. 

“At that point, the NCLD will empower NIH to consider translation of the commission’s recommendations into next steps for lymphatics,” Rockson said. “We hope that we will uncover approaches and mechanisms that can be implemented to create a new and better world for lymphatic research, healthcare, and education.” Among the possible outcomes over time are diagnostic tests, treatments, and cures, he suggested. 

The National Commission on Lymphatic Diseases includes:    

Co-chairs: 
Stephanie Dreyer, M.B.A.   
Stanley G. Rockson, M.D. 

Members: 
Melissa B. Aldrich, Ph.D., MBA 
Felicitie Daftuar, M.B.A.   
Paula Donahue, PT, DPT, MBA, CLT-LANA 
Alexa Ercolano 
Rebecca Fisher, Ph.D. 
Cynthia Hudson 
Jeffrey Iliff, Ph.D.  
Maxim Itkin, M.D. 
Babak Mehrara, M.D. 
Guillermo Oliver, Ph.D. 
Tim Padera, Ph.D. 
Gwendalyn Randolph, Ph.D. 
Hasina Outtz Reed, M.D., Ph.D.  

Serving as Executive Secretary (non-member): Selen Catania, Ph.D., NHLBI