Research Roadmap

The Roadmap

During the past decade, Lipedema has evolved from an esoteric condition that only a handful of health care professionals had heard of—let alone treated—to a legitimate condition with substantial and increasing awareness. It has been demonstrated to be unique from obesity, lymphedema, cellulite, and other adipose conditions. Research is growing rapidly, yet structural, financial, and societal barriers 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 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.

Comments will be reviewed on a rolling basis by the Lipedema Foundation team and may be incorporated into a future version of the Roadmap. We are committed to transparency and strongly value feedback from the community, and may make anonymized 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 When prominent ideas could not be traced to published works, references were provided to conference presentations, unpublished data, and non-peer reviewed literature, including patient-reported surveys.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 complicated condition, and there are many ideas and hypotheses that the Roadmap does not capture.

The Foundation’s Lipedema Research Idea Database is a living tool to view questions, ideas, and hypotheses, and includes a mechanism for submitting new ideas.

As we are in a time of early discovery around this condition, we believe there is value in capturing and publicizing a vast array of ideas and hope that this database can contribute inspiration and further innovation to the research field.

EXECUTIVE SUMMARY

See the digest.