LF-Initiated Research
Advancing Lipedema Science from Within
The Lipedema Foundation is the world's largest funder of projects to elucidate biological mechanisms, to define disease presentation, and to understand progression of Lipedema. Since inception, the Foundation has made significant investments into research being performed in labs across the globe. Areas of study include adipose biology, vascular involvement, the role of the lymphatic system, mechanisms of pain, the relationship with the immune system, and other aspects of Lipedema physiology. However, there remains much to be done, and new opportunities for research continue to emerge. To accelerate progress and complement external research, we are launching our own internally led research projects to support our mission to define, diagnose, and develop treatments for Lipedema.
Why the Foundation Leads Its Own Research
We are launching LF-initiated and managed projects primarily to complement and support the ongoing efforts of Lipedema researchers. Through collaboration with academic investigators, the Foundation focuses on projects that require centralized coordination, shared infrastructure, or scale beyond the scope of individual laboratories. Data collected through these efforts are widely shared – supporting the labs that donated samples and furthering our understanding of Lipedema. LF-initiated projects are designed to enable, and not replace, investigator-initiated research by generating shared resources, foundational datasets, and high-risk pilot data that are difficult to produce within traditional academic funding structures.
Our Approach
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 structure allows us to contribute distinct strengths that complement traditional academic research pursuits.
The Foundation 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 factors:
Strategic Directives
We select internal projects to fill identified knowledge gaps or explore strategic areas that the Foundation deems essential for advancing the field. As part of the review, the Foundation considers its currently funded external research projects to avoid any duplication in investment.
Literature & Innovation Review
We constantly review published literature to pinpoint new directions, existing gaps, and immediate opportunities. We also draw inspiration from the latest innovative research methods in other fields to assess their potential application in Lipedema research.
Community Input
We regularly review submissions to our idea database, incorporating directions and research gaps identified by members of the community.
Biobank-Driven Research
As we develop the LF Biobank, we actively seek ways to utilize its samples in research projects.
How we evaluate and share progress
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.
Current Research Initiatives
Expanding the LF Biobank
The LF Biobank was established to bridge a significant gap in research: the lack of readily available, well-annotated samples from individuals with Lipedema. The LF 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.
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Biobank sample collection is conducted through event-based recruitment (e.g. conference-based large efforts) and in collaboration with clinical partners.
Prior to collection events, the Foundation sends out calls for volunteers to sign up through our newsletter and social media network.
Detailed phenotypic and participant data is collected using our Common Case Report Form (CCRF), alongside biological samples gathered through standardized collection and processing protocols.
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Each phase of biobank expansion prioritizes both quantitative and operational goals. We focus on growing participant enrollment and increasing our collection of participant data and samples (blood, saliva, and tissue) while continuously improving our ability to reliably and efficiently scale for the future.
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This project will create a renewable and reliable source for researchers to obtain data and biological specimens from people both with and without Lipedema. This resource is available to all researchers — enabling the next wave of understanding the biology of Lipedema.
Comprehensive Proteomics of Lipedema samples
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 reveal valuable insights into disease states. To investigate this in Lipedema, we are studying the protein content in plasma of individuals with Lipedema using samples collected as part of the LF Biobank as well as samples from several collaborating laboratories. Plasma proteomics can reveal important underlying biology from any part of the body, because proteins from every tissue can end up in circulation. By understanding the changes in protein expression in individuals with Lipedema, we aim to fill critical gaps in our understanding of the disease and generate further annotated biospecimens, standardized protocols, plasma proteomic datasets, candidate biomarkers, publicly shared summaries, or peer-reviewed publications.
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Samples from the Lipedema Foundation Biobank, along with samples from collaborating laboratories, will be analyzed.
SomaLogic will generate data using their SomaScan pipeline, 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.
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This study will establish the first large-scale, high-resolution baseline of the Lipedema plasma proteome. By comparing Lipedema cases to controls, we aim to identify protein expression patterns that provide insight into disease biology and highlight potential biomarkers for future study.
The resulting dataset, paired with rich clinical metadata, will serve as a foundational resource for the field, enabling more targeted hypothesis generation, validation studies, and translational research.
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This project represents 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 outcomes that will serve as the foundation for future experiments.
Could Your Clinic Be Our Next LF Biobank Site?
Help us move research forward. If your practice regularly sees, diagnoses, and cares for people with Lipedema, your site can contribute to the LF Biobank. Saliva, blood, and clinical data are immensely valuable; sites doing surgical procedures can also contribute lipoaspirate and biopsies. Collection integrates flexibly with your routine practice, is supported by our team, and runs under our IRB-approved protocol. To learn more about participating as a site, contact biobank@lipedema.org.
Are you a researcher interested in samples for your next study?
Researchers can visit lipedema.org/sample-resources to view Lipedema sample availability in the LF and other biobanks. To request access to samples, please reach out to biobank@lipedema.org.