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Lipedema is a chronic, progressive adipose connective tissue disorder characterized by symmetrical, disproportionate fat accumulation, typically affecting the lower extremities and arms, accompanied by pain, swelling, and a sensation of heaviness. This study introduces intermediate Stages 1.5 and 2.5 to the established lipedema classification (Stages 1, 2 and 3), and other affected areas, based on physical examination, a questionnaire, and photographic documentation. Bioelectrical Impedance Spectroscopy (BIS) was employed to quantify total body water (TBW) across stages. A significant and linear increase in BMI was observed from Stage 1 to 3, correlating with increased reported pain and heaviness in the thighs, calves, and upper arms. Systemic symptoms of brain fog, debilitating fatigue, and hypothermia were significantly prevalent. TBW demonstrated a significant, stage-dependent increase in the lower extremities. Adipose tissue accumulation over the knees and feet significantly increased with lipedema stage. In contrast, shin involvement was evident in early stages and remained consistently elevated throughout later stages. Skeletal Muscle Mass (SMM) exhibited a significant increase across lipedema stages, positively correlating with fat mass (FM) in Stage 3. This study elucidates previously underrecognized clinical features and distribution patterns of lipedema, offering a refined staging system to improve understanding of its progression and burden.
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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.
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