Evidence map›Paper›PMID 42422575›Full record

ArticleFrontiers in global women's health2026

The lipedema common case report form as a research tool: standardizing lipedema data collection.

Stephanie Galia, Rachelle Crescenzi, Philipp Kruppa, Jonathan Kartt, Jesse C Cochrane, Courtney Mascio, Laura Harmacek, Stacey Heil, Elena Samouhos, Stephanie Peterson and 23 more

Abstract read
In one paragraph

Article in Frontiers in global women's health, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

33 authors.

Stephanie Galia *Lipedema Foundation, New York, NY, United States.
Rachelle Crescenzi *Department of Radiology and Medical Imaging, University of Virginia, Charlottesville, VA, United States.
Philipp Kruppa *Department of Plastic, Aesthetic and Reconstructive Microsurgery/Hand Surgery, Hospital Ernst von Bergmann, Potsdam, Germany.
Jonathan KarttLipedema Foundation, New York, NY, United States.
Jesse C CochraneLipedema Foundation, New York, NY, United States.
Courtney MascioLipedema Foundation, New York, NY, United States.
Laura HarmacekLipedema Foundation, New York, NY, United States.
Stacey HeilLipedema Foundation, New York, NY, United States.
Elena SamouhosLipedema Foundation, New York, NY, United States.
Stephanie PetersonLipedema Foundation, New York, NY, United States.
Steven M DeanWexner Medical Center, The Ohio State University, Columbus, OH, United States.
Thomas F WrightLipedema Surgical Solutions, O'Fallen, MO, United States.
Vincenza CifarelliHealth Outcomes Accelerator Group, LLC, St. Louis, MO, United States.
Timothy P PaderaDepartment of Radiation Oncology, Massachusetts General Hospital and Harvard Medical School, Boston, MA, United States.
Joseph M RutkowskiDivision of Lymphatic Biology, Department of Medical Physiology, Texas A&M University College of Medicine, Bryan, TX, United States.
Katherine S EddensDepartment of Epidemiology and Biostatistics, School of Public Health, Indiana University Bloomington, Bloomington, IN, United States.
Celia EganTrue Women's Health, Grand Rapids, MI, United States.
Sarah WhiteheadLumina Vascular Health & Laser Clinic, Seattle, WA, United States.
Karen Louise HerbstThe Roxbury Institute, Beverly Hills/Tucson, CA/AZ, United States.
Bruce A BunnellDepartment of Biomedical and Translational Sciences, Carle Illinois College of Medicine, University of Illinois Urbana-Champaign, Champaign, IL, United States.
Carrie ShawberDepartments of Obstetrics and Gynecology and Surgery at Columbia University Irving Medical Center, New York, NY, United States.
Tim HuchoTranslational Pain Research, Department of Anesthesiology and Intensive Care Medicine, Medical Faculty and University Hospital of Cologne, University of Cologne, Cologne, Germany.
Leslie HinyardDepartment of Health and Clinical Outcomes Research, Saint Louis University School of Medicine, St. Louis, MO, United States.
Sara Al-GhadbanDepartment of Plastic Surgery, Maxillofacial & Oral Health, University of Virginia, Charlottesville, VA, United States.
Allison O ScottDepartment of Radiology and Medical Imaging, University of Virginia, Charlottesville, VA, United States.
Pia OstergaardCardiovascular & Genomics Research Institute, City St George's University of London, London, United Kingdom.
Alan PittmanCardiovascular & Genomics Research Institute, City St George's University of London, London, United Kingdom.
Pamela A Nono NankamHelmholtz Institute for Metabolic, Obesity and Vascular Research (HI-MAG) of the Helmholtz Zentrum München at the University of Leipzig and University Hospital Leipzig, Leipzig, Germany.
Philipp E SchererTouchstone Diabetes Center, University of Texas Southwestern Medical Center, Dallas, TX, United States.
Isabel Forner-CorderoHospital Universitari i Politècnic la Fe, University of Valencia, Valencia, Spain.
Robert J DamstraCenter of Expertise for Lymphovascular Medicine, Nij Smellinghe Hospital, Drachten, Netherlands.
Ad HendrickxCenter of Expertise for Lymphovascular Medicine, Nij Smellinghe Hospital, Drachten, Netherlands.
Ashok SrinivasanLipedema Foundation, New York, NY, United States.

Funding

Visualizing vascular mechanisms of lipedemaR01HL157378 · NHLBI · VANDERBILT UNIVERSITY MEDICAL CENTER · PI CRESCENZI, RACHELLE L · 2021 to 2025
$2.5M
NHLBI NIH HHS R01 HL157378
6 · The paper itself

Abstract

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.

Indexed as

BiobankbiorepositoryCCRFcommon case report formdata collectionlipedemalipedema diagnosisLipedema Foundation

Identifiers

PMID42422575
PMCPMC13342235

What Socratic holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.