New Research Case Definitions of Lipedema Outlined by Global Healthcare Research Team

A newly proposed framework for research case definitions of lipedema opens doors to advance studies around diagnosis and treatment

BOSTON, MASSACHUSETTS, UNITED STATES, April 11, 2024 /EINPresswire.com/ -- Lipedema Project Inc. is excited to formally announce the publishing of its highly anticipated research paper, Proposed Framework for Research Case Definitions of Lipedema.

“This framework should provide an opportunity for meta-analysis of clinical studies and facilitate future lipedema research intercomparisons to help drive greater understanding and evolution of diagnosis and treatment,” said Matthew Carmody, MD, of Lipedema Simplified, LLC, and Harvard Medical School. “As a chronic disease, lipedema involves elements of an adipose disorder and lymphatic dysfunction with a decrease in lymph transport capacity with long-lasting symptoms. Moreover, this disease almost exclusively affects women, and because of its complex nature, it’s been difficult to properly define its characteristics, as well as to develop an agreed-upon approach to clinical diagnosis. Our hope is with our research findings, that there can now be a clinical definition to guide research moving forward to build an evidence-base in lipedema research to help further both diagnosis and treatment evolutions.”

The findings in this paper are a result of collaborative research initiatives including a narrative review of currently available literature and included observations around lipedema.

The framework of the lipedema research case definitions included eight identified characteristics of lipedema that were frequently agreed upon, and five of the identified characteristics were disputed or supported only with weak evidence. You can view a table of the identified characteristics and the potential disputes here¹.

Other key points about the framework;

It was developed from an analysis of current lipedema literature and observations from the authors’ aggregated clinical practices and programs

Excludes common comorbidities such as obesity, diabetes, cardiovascular disease, lymphedema, organ
dysfunction, and metabolic syndrome, which are beyond the scope of the definition despite their potential impact on the diagnosis and treatment of lipedema

Excludes children and males due to limited evidence about lipedema in these populations

Read more about the key findings in the paper,² including further explanations and exploration of each identified characteristic here.

Proposed Framework for Research Case Definitions of Lipedema was a collective global initiative by Lipedema Simplified and Lipedema Project and leading healthcare professionals from Vasanta Health Science LLC; Harvard Medical School; the Center for Vascular Medicine in Hamburg, Germany; Hospital Universitari i Politècnic la Fe, University of Valencia in Valencia, Spain; the Hospital of Marina in Rome, Italy; Hautmedizin Bad Soden, in Bad Soden, Germany; and the Stanford Center for Lymphatic and Venous Disorders, Stanford University School of Medicine.

Published authors include Leslyn Keith, OTD, CLT-LANA; Catherine Seo, PhD; Monika M. Wahi, MPH, CPH; Siobhan Huggins; Matthew Carmody, MD; Gabriele Faerber, MD, PhD; Isabel Forner-Cordero, MD, PhD; Sandro Michelini, MD; Stefan Rapprich, MD; and Stanley G. Rockson, MD.

You can read Proposed Framework for Research Case Definitions of Lipedema here >

The publication of what promises to become the seminal book about lipedema, Lipedema - Principles and Practices of Diagnosis and Treatment, is the current project for many of the authors, in collaboration with additional global experts. The book is scheduled for release early in 2025 by Hammersmith Health Books, London, UK. Limited copies will be available for pre-order.

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About Lipedema Simplified and Lipedema Project
Lipedema Simplified, LLC offers educational content, webinars, coaching, online and live events, a community membership group, e-books, recent research, and resources for medical, social, and community use, including a find-a-provider portal. A global resource, Lipedema Simplified was founded by Catherine Seo, PhD in 2013 as part of her personal journey searching for and finding answers. It is the first, largest, and longest-running organization of its kind.

Lipedema Project Inc., a nonprofit 501(c)3 organization, provides extensive offerings of research, resources, and expertise to individuals with lipedema and the providers who care for them. Mark L. Smith, MD, FACS partnered with Catherine Seo, PhD and together they founded Lipedema Project in 2014 to fill the need for rigorous science to understand, define, & treat lipedema. They sponsored and produced the First International Symposium on Lipedema - Setting the Research Agenda for Lipedema: Steps Towards a Cure held in April 2015 in New York City. The renowned documentary, Lipedema - The Disease They Call FAT, premiered during this symposium and has now been viewed over 4 million times raising awareness about lipedema.

Learn more about Lipedema Simplified at www.lipedema-simplified.org.
Learn more about Lipedema Project at www.lipedemaproject.org.

Catherine Seo, Ph.D., CEO
Lipedema Simplified
+ +1.617.721.9463
catherine@lipedema-simplified.org

¹ https://www.liebertpub.com/doi/10.1089/lrb.2023.0062#tb1
² https://www.liebertpub.com/doi/10.1089/lrb.2023.0062
³ https://www.liebertpub.com/doi/10.1089/lrb.2023.0062