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Currently managed US prevalence of cutaneous venous malformations (cVMs): a nationally representative, retrospective,

Jack Ray Gallagher1, Susan Carroll2, Jeffrey Martini3

  • 1Clarity Pharma Research, LLC, 511 Audubon, Spartanburg, SC, 29302, USA.

Orphanet Journal of Rare Diseases
|October 7, 2025
PubMed

Insights

Cutaneous venous malformations (cVMs) affect nearly 200,000 individuals annually in the U.S. This study highlights the need for better treatments and care access for this rare vascular condition.

Area of Science:

  • Vascular Anomalies
  • Epidemiology
  • Dermatology

Background:

  • Cutaneous venous malformations (cVMs) are rare vascular anomalies causing disfigurement and pain.
  • Limited treatment options exist due to poor drug penetration and lack of FDA-approved therapies.
  • Epidemiologic data on cVMs is scarce, necessitating real-world studies.

Purpose of the Study:

  • To estimate the annual treatment prevalence of cVMs in the United States.
  • To provide crucial epidemiologic data for this understudied condition.
  • To inform future research and therapeutic development for cVMs.

Main Methods:

  • A nationally representative, blinded, observational probability study was conducted.
  • Physicians from various specialties were recruited via blinded invitations.
  • Participants self-reported treated cVM patients, with estimates adjusted for comanagement.

Main Results:

  • 515 physicians completed the survey, with 376 managing cVM patients.
  • The estimated annual prevalence was 194,195 patients (0.06% of the U.S. population).
  • This includes 135,687 with cutaneous-only and 58,508 with mixed lesions.

Conclusions:

  • cVMs affect a substantial number of individuals across all age groups in the U.S.
  • Findings emphasize the need for improved access to care for cVM patients.
  • Development of targeted therapies is crucial for this debilitating condition.
Abstract

Keywords:
Combined venous malformationsCutaneous venous malformationsEpidemiologyMixed venous malformationsObservational studyPrevalenceVascular anomaliesVascular malformationsVenous malformations

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