Inflammatory Breast Cancer Research Foundation tissue and data bank

IBCRF BioBank at Indiana University–2020 update

Several years ago, we realized that a program focused on cancer tissue and a location that would be able to help with the enrollment of patients and obtaining medical records was needed. With more and more challenges in place, due to patient privacy concerns, it was getting harder for us (as a non-profit) to help patients get the necessary records to accompany their tissue samples. Tissue with the associated medical record aids the quality of research. In the Fall of 2019, the IBCRF BioBank was moved to Indiana University after approval by the IU institutional review board. Doctors Kathy Miller and Milan Radovich are the IU staff responsible for the oversight of our biobank at IU, so it is now named the IBCRF biobank at Indiana University. Samples already at IU were added to our samples to make a more robust biobank. Working under Indiana University’s IRB means the biobank is held to the highest of standards. We are responsible for the proper care and handling of these tissue samples that have been entrusted into our care by patients and making this transition allows us to assure patients, and their families, that their samples and medical information is safe and secure.

IBCRF BioBank and Clinical Database–the history

Research of inflammatory breast cancer has been hampered by the lack of an easily accessible, well documented cohort of IBC patients.

To address this problem the Inflammatory Breast Cancer Research Foundation established the IBCRF BioBank and clinical database to provide researchers easier access to the inflammatory breast cancer patient community. Launched in February 2005, after protocol approval by Genetic Alliance Registry and BioBank, it has patient samples from many locations across the country, patients who were diagnosed and treated a different institutions.

The BioBank contains tumor and non-tumor DNA, RNA, archival tissue, medical records and other related materials.

In October 2006, the Inflammatory Breast Cancer Research Foundation received a $25,000 Best Practices in Breast Cancer Advocacy Award for the IBCRF BioBank from the National Breast Cancer Coalition. We presented a BioBank poster and gave a talk at the 2007 National Breast Cancer Coalition’s Annual Advocacy Training Conference.