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The Establishment of an Inflammatory Breast Cancer Registry and Biospecimen Repository

18 Years
Not Enrolling
Inflammatory Breast Cancer

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Trial Information

The Establishment of an Inflammatory Breast Cancer Registry and Biospecimen Repository

Inflammatory breast carcinoma (IBC) is an extremely rare, aggressive form of breast
carcinoma that disproportionately affects young women. Clinical features of IBC include
warmth, redness, edema, skin dimpling and rapid enlargement; the hallmark pathologically is
dermal lymphatic invasion. Minimal criteria necessary for a clinical diagnosis of IBC have
been debated and relatively little is known about the epidemiology, pathogenesis and
molecular characteristics of these very lethal tumors. This project, funded by a grant from
the Department of Defense awarded to PHL, would develop a national registry of approximately
300 volunteers (aged 18 years or older) with IBC. Subjects will provide access to medical
records, pathology records, slides, blocks and tissue (fixed and frozen) and x-rays and
consent to an interview. Recruitment will be performed at collaborating institutions and
through an IBC research foundation (Owen Johnson) that maintains a website and e-mail
contact lists. The registry resources would be made available collaboratively to anyone in
the breast cancer research community, based on merit as determined by a designated
committee. Central aims of the study include determining whether clinically or
pathologically defined IBC differs in clinical behavior or biologically, identifying markers
in IBC that may provide useful information about the aggressive potential of breast cancers
generally, and evaluation of tissue for mouse mammary tumor virus (MMTV) related sequences.
The purpose of this IRB submission is to review the role of MES as a collaborating
pathologist on this study. Enrollment is closed as of this time.

Inclusion Criteria

- Patients will be recruited from collaborating institutions throughout the US and
through the IBC research foundation (established by patient advocate, Mr. Owen
Johnson), which maintains a website and a research e-mail list. The goal is to
recruit approximately 300 volunteers, at least 18 years of age or older.

Type of Study:


Study Design:

Time Perspective: Retrospective


United States: Federal Government

Study ID:




Start Date:

June 2003

Completion Date:

Related Keywords:

  • Inflammatory Breast Cancer
  • Mammary
  • Diagnosis
  • Aggressive
  • Pathology
  • Epidemiology
  • Breast Neoplasms
  • Inflammatory Breast Neoplasms



National Cancer Institute (NCI), 9000 Rockville Pike Bethesda, Maryland  20892