The Lipedema Foundation (LF) has taken a big step toward solving a problem at the heart of patients’ struggles: a lack of scientific understanding of Lipedema as a distinct disease. The key place where scientific understanding begins is in research laboratories, which need access to a reliable source of biosamples (also called biological samples) for study. But biosamples have been insufficient for the field of Lipedema research—until now.

In the summer of 2023, LF formed a partnership with Vanderbilt University Medical Center (VUMC) and awarded it a $709,500 grant to help establish the first-ever Lipedema biorepository, or “library” of biosamples. This is a collaborative grant, awarded to investigators in the SALT (Sodium Adipose & Lymphatics Translational) Imaging Lab in the Department of Radiology and the Vascular Medicine Section in the Division of Cardiovascular Medicine. This biorepository will dramatically expand research capabilities. As Jonathan Kartt, Chief Executive Officer of LF, explained, “To date, one of the biggest barriers to advancing Lipedema research has been the lack of well-characterized biological samples from participants with Lipedema and from those without the condition. We are excited to launch this biorepository in partnership with the stellar clinical and research team at VUMC and are optimistic it will accelerate the field’s work to better define, diagnose, and treat Lipedema (1).”

Why are Biosamples so Important?

A biosample can be a sample of any biological material, such as tissue, blood, saliva, plasma, purified DNA, or urine (2). Well before disease treatments are ready for human patients, biosamples are used in researchers’ laboratory studies to help answer basic questions about a disease, such as what causes it and whether any genes or proteins differ between patients with and without the disease. These differences may eventually become therapeutic targets. This process of turning laboratory observations into therapies is called translational research (3).

If a patient has consented, then their biosamples can be kept in a biorepository where researchers can gain access to them to begin this process. The Lipedema Biorepository at Vanderbilt Medical Center funded by LF will collect, catalogue, store, and distribute tissue, blood, and DNA biosamples to enable Lipedema researchers to conduct critical laboratory studies (4).

Advancing Lipedema Foundation’s Objectives

The Lipedema Biorepository at Vanderbilt Medical Center funded by LF will advance many of LF’s objectives, outlined in our Lipedema Research Roadmap. The first of these objectives is to create an environment conducive to high-quality research. The new biorepository is a vital component of a more robust research infrastructure. Once the biorepository is fully operational, researchers will be able to execute high-level research with a consistent source of biosamples, push the field in new directions, and advance their careers in this emerging field. Once launched, patients will also be able to contribute to creating an environment conducive to high-quality research by asking their doctors about donating biosamples to the biorepository (5).

Another LF objective, to develop diagnostic and biomarker tools, is also bolstered by the biorepository. Biomarkers are medical signs detected in biosamples, such as genes or proteins, that indicate the presence of a disease (6). Biomarkers may be used to establish a diagnosis, monitor disease progression, determine whether a patient could benefit from a treatment, and measure response to a treatment (7). The Lipedema Repository at Vanderbilt Medical Center funded by LF will be able to help enable researchers to identify Lipedema-specific biomarkers that can be applied to differentiate this disease from other conditions and develop targeted treatments.

Additional LF objectives that will benefit from the new biorepository’s biosamples are to characterize the biology of the disease, to develop treatments, and to cultivate a greater epidemiology understanding.

Choosing VUMC

VUMC’s strong Lipedema research program led to this partnership with LF. VUMC’s SALT Imaging Lab used noninvasive magnetic resonance imaging methods to demonstrate that Lipedema has distinct characteristics from obesity. "We began this research with support from the Lipedema Foundation by applying magnetic resonance imaging to key questions about Lipedema symptoms of fat and fluid in the legs,” said SALT Lab Lead, Rachelle Crescenzi, Ph.D., Assistant Professor of Radiology and Biomedical Engineering at VUMC. Dr. Crescenzi is the co-principal investigator at the Lipedema Biorepository at Vanderbilt Medical Center funded by LF, along with Aaron Aday, M.D., M.Sc., Assistant Professor of Medicine and Co-Director of Vascular Medicine (1). As a collaborative project, creation of the biorepository will utilize expertise of the SALT Imaging Lab as well as the clinical and research resources of the Vascular Medicine Section. The biorepository will engage patients in research through the clinical operation at VUMC, which cares for women with Lipedema from around the country. A unique and notable strength of this grant is the ability to harness the power of the broad clinical and research expertise of the collaborating departments at VUMC with the insight, vision, and funding offered by LF. “Now we have the incredible opportunity to ask a host of new questions about disease mechanisms,” said Dr. Aday.

The exciting collaboration that established the Lipedema Biorepository at Vanderbilt Medical Center funded by LF will expand the scientific understanding of Lipedema. This biorepository joins LF’s other initiatives, including research grants and the LEGATO Lipedema Library, to enable researchers to better understand, diagnose, and treat Lipedema, and ultimately to improve patients’ lives.

Stay tuned by signing up for LF’s newsletter to get updates about the biorepository launch and ways to participate in this new phase of Lipedema research.

Vanderbilt University Medical Center, Department of Radiology. (2023). VUMC receives funding from lipedema foundation for new biorepository. https://www.vumc.org/radiology/news-announcements/vumc-receives-funding-lipedema-foundation-new-biorepository
National Center for Advancing Translational Sciences(NCATS). Biosample. NCATS Glossary. https://toolkit.ncats.nih.gov/glossary/biosample/
National Center for Advancing Translational Sciences(NCATS). Understand translational research tools. NCATS Toolkit. https://toolkit.ncats.nih.gov/module/discovery/developing-translational-research-tools/overview/
National Center for Advancing Translational Sciences(NCATS). Biorepository. NCATS Glossary. https://toolkit.ncats.nih.gov/glossary/biorepository/
Lipedema Foundation. (2023). Lipedema Research Roadmap Executive Summary. https://www.lipedema.org/s/LF-Roadmap-Exec-Summary.pdf
National Cancer Institute (NCI). Biomarker testing. NCI Dictionaries. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/biomarker-testing
National Center for Advancing Translational Sciences (NCATS). Biomarker. NCATS Glossary. https://toolkit.ncats.nih.gov/glossary/biomarker/