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  • Background Lipedema is a chronic medical condition primarily affecting women, characterized by bilateral, symmetrical, disproportionate fat deposition in the lower limbs, and sometimes arms and lower trunk. Pharmacological interventions remain limited, but glucagon-like peptide-1 receptor agonists (GLP-1 RAs) and dual GLP-1/glucose-dependent insulinotropic polypeptide receptor agonists (GLP-1/GIP RAs) could provide potential therapeutic benefit due to their effects on weight, metabolism, pain, and inflammation. Methods This was a cross-sectional, patient-reported online survey study comparing self-reported lipedema symptom severity, medication use history, and physical and mental health outcomes across three groups of women with lipedema stratified by GLP-1/GIP receptor agonist medication use status (current users, discontinued users, and never-users). The survey captured demographics, lipedema characteristics, medication use history, and intensity of lipedema symptoms. Additionally, the Patient-Reported Outcomes Measurement Information System (PROMIS) Global Health-10 (PROMIS-10) instrument was used to assess physical and mental health. Analyses compared current users, discontinued users, and never-users of GLP-1/GIP RA medications. Results Of 2852 respondents, 2719 met inclusion criteria for analysis. Most participants (99.7%) identified as female, with a mean age of 52.4 years. Approximately 55% were current GLP-1/GIP RA users, most commonly taking tirzepatide. The primary reported reason for medication use was weight management (67.2%), followed by lipedema symptom management (19.3%). PROMIS-10 scores demonstrated higher physical and mental health ratings among current users compared with never-users (median Global Physical Health (GPH): 42.3 vs. 39.1; Global Mental Health (GMH): 44.9 vs. 40.8). Participants recalled improvements in both general health and lipedema symptoms after starting medication. Symptom severity scores for pain, swelling, and functional limitation were consistently lower among current users. Conclusions Self-reported participant responses indicated improved health and symptom severity while using GLP-1/GIP RA medication. These findings support further investigation of GLP-1/GIP RA medications as potential therapeutic options for lipedema.

  • Lipedema is a chronic adipose tissue condition that primarily affects women. Despite increasing recognition of lipedema, the condition remains poorly understood and lacks standardized diagnostic criteria or confirmatory tests. Variability in definitions and measurement across clinical and research settings impedes comparability across studies, constraining the evidence base needed to support future advances in clinical practice and patient care. To address challenges associated with inconsistent definitions and data collection, the Lipedema Foundation (LF) partnered with clinicians, researchers, and biostatisticians to develop a Lipedema Common Case Report Form (CCRF). The CCRF was designed to be a research data harmonization tool and is not intended to define diagnostic standards or guide clinical treatment decisions. Its development involved review of published lipedema clinical guidelines and collaborative work to define data elements and attributes for inclusion. When they existed, validated or standardized measures were incorporated directly. When no suitable standardized measures were available, an iterative and collaborative process was used to develop lipedema-specific Common Data Elements (CDEs). The initial version of the CCRF was piloted in participants with and without lipedema, and updates based on participant and clinician feedback were incorporated into the CCRF. A biostatistical review evaluated data completeness, quality, and structure, leading to additional refinements. The final Version 1 instrument consists of 682 CDEs organized into four classifications: (1) Core, (2) Supplemental Highly Recommended, (3) Supplemental, and (4) Exploratory. The current version is prepared for dissemination in the field. By disseminating the CCRF broadly and encouraging adoption in all lipedema research beginning in 2026, including all newly initiated LF-funded projects, LF intends to evaluate its use with grantees and iterate systematically to achieve consistent and comparable data collection. The CCRF provides a structured framework for harmonized data collection that may facilitate comparability across studies and support future development of standardized diagnostic and research methodologies.

Last update from database: 8/19/26, 7:27 AM (UTC)

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