Research Roadmap

The Roadmap

Over the past decade, Lipedema has gone from an esoteric condition recognized by only a few healthcare professionals to a well-established fat disorder gaining widespread awareness. Research confirms it is distinct from obesity, lymphedema, cellulite, and other adipose tissue conditions. Fat disorders research is expanding rapidly, though structural, financial, and societal barriers to progress still remain.

The Lipedema Research Roadmap recommends action to grow and strengthen research through six objectives:

• Create an Environment Conducive to High-Quality Research

• Develop a Standard Lexicon and Best Practices

• Develop Diagnostic and Biomarker Tools

• Characterize Biology of the Disease

• Develop Treatments

• Cultivate Greater Epidemiology Understanding

The Research Roadmap incorporates input and over 1,300 suggestions and comments from more than 60 global stakeholders, who participated in brainstorming sessions and as reviewers. Participants included researchers, patients, surgeons, physicians, therapists, and funders.

FEEDBACK

We invite our community to submit comments and feedback through an open comment submission form after reading the Roadmap.

The Lipedema Foundation team will review comments on a rolling basis and may incorporate them into a future version of the Roadmap. We are committed to transparency and strongly value feedback from the community, and we may make anonymous comments public.

Technical Review

Lipedema: A Current Understanding of Its Pathology and Natural History (PREPRINT, May 2023)

Prior to drafting the Research Roadmap, the Lipedema Foundation created a narrative review of Lipedema research, focused on natural history and pathophysiology, to critically assess the state of the science. The resulting document, Lipedema: A Current Understanding of Its Pathology and Natural History” by Guy Eakin and Stephanie Peterson, is published here as a “preprint” alongside the forward-looking Research Roadmap.

Specific attention was given to investigating and, where necessary, correcting citation of original primary data sources. When prominent ideas could not be traced to published works, references were provided to conference presentations, unpublished data, and non-peer-reviewed literature, including patient-reported surveys.

This document has not yet undergone peer review. Comments and feedback are welcome at roadmap@lipedema.org.

Research Idea Database

Lipedema is a complex condition, and the Research Roadmap cannot encompass every question or hypothesis currently under exploration. 

The Foundation’s Lipedema Research Idea Database is a dynamic, evolving resource that catalogs emerging ideas, unanswered questions, and proposed hypotheses. It also invites new submissions focused on Lipedema and fat disorders research.

As research into this condition is still in its early stages, we believe there is value in capturing and publicizing a vast array of ideas and hope that this database will inspire collaboration, spark innovation, and accelerate progress across the fat disorders research field.

EXECUTIVE SUMMARY

See the digest.