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Inflammatory Breast Cancer
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Inflammatory Breast Cancer Registries Information:

Since we know that Inflammatory Breast Cancer is uncommon but much more deadly than other types of breast cancer, and since we know that it has not been researched as well as other types of breast cancer, we can all do something to help the researchers by joining an IBC Registry if we were diagnosed with IBC and by educating others about the Registries.

There are two very worthwhile IBC Registry Programs - one is associated with the George Washington University Medical Center and the other is associated with the Tufts/New England Medical Center:

George Washington University Medical Center IBC Registry:

The George Washington University Inflammatory Breast Cancer Registry is under the direction of Dr. Paul Levine. As of April, 2005, they have enrolled 160 IBC patients. They hope to enroll at least 300 IBC patients.

The following websites have detailed information about this study:




This study, conducted by the NCI and the George Washington University Medical Center (GWUMC), will examine breast tissue from patients with inflammatory breast cancer (IBC) for tumor markers and factors associated with angiogenesis. Angiogenesis is the formation of new blood vessels that is essential for tumor growth and spread. IBC is an extremely rare, aggressive form of breast cancer that disproportionately affects young women. The risk factors for IBC, its cause, and how it develops are unknown, but the disease appears to involve a high degree of angiogenesis.

Tissue specimens for this study will be obtained from GWUMC's Inflammatory Breast Cancer Registry and Biospecimen Repository. The registry was established to develop a national registry of patients with IBC that includes standardized clinical, epidemiological, and pathological information, along with disease recurrence and survival data.

For this study, tissue specimens from the repository will be tested for biological markers and angiogenesis parameters to help in the classification of the tumors. Biological markers (such as estrogen receptor, progesterone receptor, the p53 gene, and others) and angiogenesis parameters (such as various proteins involved in vessel formation) will be examined to determine their prevalence in tissue specimens and their relationship to patient survival. When possible, the findings will be compared with non-IBC tissue samples.


Paul H. Levine, M.D.
Research Professor
Department of Epidemiology and Biostatistics
The George Washington University School of
Public Health and Health Services
2300 I Street N.W.
Ross Hall 118
Washington, D.C. 20037

Tel: 202-994-4582
Fax: 202-994-9940

Electronic Mail: sphphl@gwumc.edu

Website: http://www.gwumc.edu

* * * * * * * * * * * * * * * *

Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754

Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local), 1-866-411-1010 (toll free)
Fax: 301-480-9793

Electronic Mail: prpl@mail.cc.nih.gov

The Registry involves filling out some forms regarding your medical history, diagnosis, etc. You have the choice to give them access to your stored diagnostic biopsies. They are building a 'bank' of IBC tumors so that they can determine what is different about IBC compared to other types of breast cancer.

Here are some highlights of the research so far:

1. The iBC Registry's current information suggests that the current definition of IBC endorsed by the American Joint Committee on Cancer is inadequate. One Registry goal is to have the definition revised.

2. Physician awareness is not universal. Registry information will be published in Journals and presented at meetings in an effort to educate physicians.

3. Lab tests performed on tumor samples: one thing they have found is that the BP1 gene currently studied by Dr. Patricia Berg at GW has shown up in every single tumor sample they studied thus far. They are also looking at the presence of a possible human breast cancer virus, which they and their colleagues at New York's Mt. Sinai Medical Center have reported (Cancer, 2004) to be more prominent in aggressive breast cancer.

4. Questionnaire data is still being analyzed, however one thing that has become clear is that when compared with women with non-aggressive breast cancer, the IBC patients were more likely to have used birth control for a longer period of time.

5. The Registry is working with GlaxoSmithKline (GKS) assisting with studies involving a new erb-targeted small molecule, lapatinib. GSK researchers have reported responses in patients with IBC who have been treated with lapatinib in Phase 1 trials. GSK has two studies underway, one using lapatinib as a primary agent in combination with paclitaxel and the second using it for patients who have relapsed on prior therapies.

Dr. Levine stated:

'If any patient or physician is interested in participating in this trial, I (Dr. Paul Levine) can discuss the details with that individual. It is a very well documented trial and the treatment would have to be given at one of the GSK study sites.'

Tufts/New England Medical Center IBC Registry:

The Tufts/New England Medical Center is also accruing IBC patients for an IBC Registry. The IBC Initiative is under the direction of Dr. John Erban, chief of hematology/oncology at Tufts-New England Medical Center.

Tufts New England Medical Center's main website address:


Tufts-New England Medical Center created a database, opened the Registry and has collected several dozen case studies as of March, 2005, from women with IBC. This project created a registry of cases for the first time in New England. They continue to recruit patient participation and once they have gathered enough data, will compare the information to see what these IBC patients have in common. The next step will be to develop laboratory research.

Contact information for John K. Erban, M.D., who is the Chief, Division of Hematology/Oncology; Director, Breast Cancer Program; and Director, Hematology Laboratory

Tufts-New England Medical Center Office:

Tel: (617) 636-5146
Fax: (617) 636-2342

Mailing Address:

750 Washington St., #245
Boston, MA 02111