LF Common Case Report Form (CCRF)

Advancing Lipedema Research Through Standardization

The Lipedema Foundation’s Common Case Report Form (CCRF) represents an important step in strengthening the research infrastructure for Lipedema.

Developed through international collaboration and broad stakeholder engagement, the CCRF is a unified, publicly available framework designed to improve data quality, reproducibility, and comparability across studies. By supporting more consistent data collection, it helps researchers generate findings that can be meaningfully compared and evaluated.

The CCRF is organized into Core, Supplemental–Highly Recommended, Supplemental, and Exploratory categories. This structure allows for standardization of essential data elements while maintaining flexibility for different research designs and clinical settings.

By enabling consistent and transparent data collection, the CCRF supports:

  • Cross-study comparison

  • More rigorous diagnostic research

  • Stronger foundations for evidence generation

As adoption expands in 2026 and beyond, this shared framework is expected to facilitate meta-analyses, support more consistent diagnostic research, and strengthen the evidence base informing future advances in treatment, policy, and patient care.

Steps involved in CCRF development:

  • Began with a rough list of elements to collect from Box 4 (page 24) of the Lipedema Research Roadmap (included input from > 60 stakeholders)

  • Created a Common Data Element (CDE) database, pulled from as many published sources as possible

  • Reviewed with trusted clinicians, researchers, and patients

  • Configured in REDCap Cloud and did extensive internal and external user testing 

  • Piloted the CCRF at an LF Biobank recruitment event in March 2025 at the FDRS conference in Atlanta, with 74 participants and 3 diagnosing clinicians

  • Engaged an external biostatistician to analyze pilot data and recommend CCRF CDE refinements 

  • Categorizing the CDEs into four categories: Core, Supplemental - Highly Recommended, Supplemental, and Exploratory with input from our Scientific Advisory Committee.

CCRF Data Dictionary (Core)
CCRF Data Dictionary (Supplemental - Highly Recommended)
CCRF Data Dictionary (Supplemental)
CCRF Data Dictionary (Exploratory)

  • At this stage in our field’s development, clinicians and investigators do not always agree on precise diagnostic criteria. We expect that variation across countries and groups will persist for some time. This is expected and acceptable, as long as teams collect and report data in comparable ways. 

    Consistent capture of diagnostic factors, comorbidities, and other data will allow the field to:

    • Assess the applicability of findings from individual studies

    • Compare results across studies

    • Conduct rigorous meta-analyses

    • Conduct retrospective analyses to understand which factors matter most for diagnosis

    • Identify and classify meaningful subtypes