Establishing an Inflammatory Breast Cancer Registry
Establishing an Inflammatory Breast Cancer Registry
Inflammatory breast carcinoma (IBC) is an extremely rare, aggressive form of breast cancer
 that disproportionately impacts young women. IBC often affects the skin of the breast, as
 well as the breast itself, making it appear inflamed. The purpose of this study is to collect
 data and information on IBC patients so that researchers can study factors associated with
 IBC. The data and information collected will be used to establish the IBC Registry, a private
 cancer registry.

 Approximately 300 persons who are 18 years or older and who have been diagnosed with IBC will
 participate in this study. Participants will provide researchers with access to their medical
 and pathology records, slides, tissue, and x-rays. They also will consent to a 15-minute
 telephone interview concerning general information about themselves and the initial
 manifestation of IBC and to a 30-minute interview about their medical history.
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.
-  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.