LF Initiated Research Projects

 

Advancing our mission through in-house research and collaboration

The Lipedema Foundation has invested over $13.6M across 74 published research projects, and there is still critical work the field needs that no single lab is positioned to do. To fill those gaps, we are launching our own internally-led research initiatives in direct support of our mission to define, diagnose, and develop treatments for Lipedema.

 

Why we’re launching our own research initiatives

 
 
 

How our LF-initiated research works

Our internal research program is a dynamic collaboration, leveraging the expertise of dedicated Lipedema Foundation staff alongside specialized external contractors and partners. Our Scientific Advisory Committee reviews our research questions and proposed directions, offering essential feedback and recommendations regarding projects that the Foundation is best equipped to manage and execute.This unique structure grants us significant advantages over traditional academic research institutions.

LF employs a multifaceted and rigorous approach to selection and prioritization of research projects. This process ensures that projects are strategically aligned with the Foundation's goals and address the most critical needs of the Lipedema community. Our selection process is driven by several key factors:

Strategic Priorities

We select internal projects to fill identified knowledge gaps or explore strategic areas that the Foundation deems essential for advancing the field.

Community Input

We regularly review submissions to our idea database, incorporating directions and research gaps identified by members of the community.

Literature Review

We continuously review published research to identify gaps, new directions, and immediate opportunities, while exploring innovative methods from other fields.

Biobank-Driven Research

As we develop our Biobank, we actively seek ways to utilize its samples in research projects.

 

Progress and findings

Projects follow a structure of clear milestones and accountability.  Regular reviews will assess the progress of each initiative, allowing us to refine our approaches and direction based on the latest evidence.

We are committed to sharing our findings with the research community through peer-reviewed publications or on our website, regardless of the outcomes.  


LF-Initiated Research Initiatives

SomaScan for Proteomics

We are working to build a comprehensive understanding of the  Lipedema proteome - the full complement of proteins expressed in cells, tissues, or whole organisms. Because proteins are the functional molecules that carry out cellular processes, changes in their structure or expression reveals valuable insights into disease states. To investigate this in Lipedema, we are studying the protein content in plasma of Lipedema patients using samples collected as part of the LF BioBank as well as that of several collaborating laboratories. Plasma proteomics can reveal important underlying biology from any part of the body, because proteins from every tissue end up in circulation. By understanding the changes in protein expression in Lipedema patients, we aim to fill critical gaps in our understanding of the disease and further advance diagnostics and treatment.

    • Samples from the Lipedema Foundation Biobank,, along with samples from collaborating laboratories, will be analyzed.

    • Data will be generated by SomaLogic using their SomaScan approach, a high-throughput, aptamer-based proteomics platform capable of simultaneously surveying over 10,000 proteins.

    • After validation of the discovery data, exploratory bioinformatics analyses will be carried out on the generated data to pinpoint potential biomarkers and genes linked to Lipedema.

  • Plasma proteomics only exists for a small number of Lipedema samples - this experiment will set the baseline.  Any differences between controls and Lipedema cases will be a significant success.

  • This project represents the most ambitious and comprehensive analysis of the Lipedema plasma proteome conducted to date. By including a significantly larger sample size and broader target coverage than previous studies, the research will yield essential outcomes that will serve as the foundation for future experiments.

    The resulting plasma proteomic scan, coupled with its associated metadata, will be a valuable infrastructural contribution to the field. These insights will empower researchers to formulate more precise and impactful research questions.

 

Expanding the Biobank

The Lipedema Biobank was established to bridge a significant gap in research: the lack of readily available, well-annotated samples from individuals with Lipedema. The Biobank addresses this challenge by supplying authorized researchers with de-identified biological samples, including blood, urine, adipose, and other tissue types, along with corresponding clinical and lifestyle data.

    • Biobank sample collection is conducted through event-based recruitment (e.g. conferences) and in collaboration with clinical partnerships.

    • Prior to collection events LF sends out calls for volunteers and/or participants to sign through our newsletter and social media network. We collect biological samples and data from unaffected people (controls) and people with Lipedema.

    • Detailed phenotypic and participant data is collected using our Common Case Report Form (CCRF), alongside samples gathered through standardized collection and processing protocols.

  • The biobank expansion in 2026 will prioritize both quantitative and operational goals. Key quantitative targets include enrolling over 100 new participants and increasing our collection of blood and adipose tissue samples. Beyond meeting these targets, we are focused on understanding how to reliably and efficiently scale the biobank for future growth.

  • This project expands the availability of research-ready samples and creates a sustainable resource that other research studies can use to investigate the pathophysiology of  Lipedema. Researchers can learn more here. We will also have participant clinical and demographic data collected through the LF developed CCRF.