The Komen Tissue Bank is the only known biorepository that collects, stores, and annotates healthy breast tissue donated by volunteers who exhibit no signs of breast cancer.
Our history is a wonderful mix of women and men fighting for the health rights of others, asking for what they want and truly believe is possible to have, and being in the right place at the right time.
Rufenbarger, a breast cancer patient advocate, attended a Progress Review Group (PRG) meeting held at the National Cancer Institute (NCI). The group convened to examine the status of breast cancer research and identify factors that could be impeding progress.
One of the recommendations the group made was that to understand cancerous behavior it was important to first understand normal tissue.
Rufenbarger participated in this group as a patient advocate, and after it ended, she moved on to other pursuits, believing that since the NCI had convened the PRG they would implement the changes needed to solve the identified challenges.
A meeting of the Amelia Project was held in Indianapolis, gathering basic science researchers and clinicians together to learn from one another about what was needed in breast cancer research.
A young researcher was looking for some normal breast tissue samples to use as a control in her research, and she asked the keynote speaker from the NCI where she might obtain such samples.
The NCI speaker informed her there weren't any such samples readily available, and that she would never get any, because anyone who has them keeps them to themselves. Rufenbarger, who was also in attendance, was dismayed upon hearing this and started developing a plan to change the situation.
She called on Dr. Anna Maria Storniolo, an IU medical oncologist who ran a breast cancer prevention program, to work with her to create a bank that would eventually contain breast tissue for normal controls in breast cancer research.
This plan began with a small project for IU research fellow Dr. Bryan Schneider, (now a world-renowned medical oncologist and researcher at IU). He needed to collect some normal control blood samples for a specific project.
Dr. Storniolo and Rufenbarger worked with the IU Center for Bioethics and the university’s Institutional Review Board (IRB) to allow Dr. Schneider to collect samples on one day at the Indianapolis Race for the Cure by encouraging the Indy Race participants to donate their blood.
The event was so successful that Dr. Schneider collected all the samples needed for his project in just one day.
As part of that project, a questionnaire asked participants if they would be willing to allow their samples to be used for unspecified future research. More than 95 percent of the participants said they would.
Armed with these results, Rufenbarger and Dr. Storniolo worked with the IRB to write a protocol that would allow blood and breast tissue to be collected for unspecified future research as normal controls.
Around this time, breast surgeon Dr. Susan Clare joined the effort, contributing a customized database she developed while working in Germany. For several years, Rufenbarger and Drs. Storniolo and Clare worked together to get the tissue bank up and running.
The biorepository was initially called Mary Ellen’s Tissue Bank, named for a patient of Dr. Storniolo who died at a young age. Her family was instrumental in raising money to get the tissue bank off the ground.
Rufenbarger, Storniolo, and Clare had the opportunity to meet with the CEO of Susan G. Komen in Dallas, at which time Komen (the national foundation) committed $1 million per year to fund the bank. In honor of this commitment, the project was renamed the Susan G. Komen Tissue Bank at the IU Simon Cancer Center (also called the Komen Tissue Bank or the KTB) and regularly scheduled tissue collections began.
Over the next few years, the staff was hired consisting of a COO, a biospecimen manager, and a database programmer. Additional positions were added in the following years.
Through a series of serendipitous events, the Komen Tissue Bank partnered with the Super Bowl Host Committee, which was organizing Super Bowl XLVI in Indianapolis early the following year. This partnership resulted in a project called Indy’s Super Cure.
The goal of this partnership was to collect samples from a large number of women over a two-day period, focusing on increasing minority participation in the tissue bank.
Indy’s Super Cure was extremely successful, resulting in the collection of tissue from 665 racially diverse women in two days – that’s more samples than had been collected in the entire year prior. A gala event that preceded the big game raised $1 million for the tissue bank.
Indy’s Super Cure put the Komen Tissue Bank on a more structured path, yielding collection events that recruited more participants and more formalized volunteer training.
The KTB has traveled around Indiana and to several other states, always with the goal of diversifying its banked samples. Tissue collection events have been held in Fort Wayne, Lafayette, Bloomington, and Evansville within Indiana, as well as in Louisville, Chicago, Houston, Detroit, New York City, Phoenix, and Orange County, Calif.
The Komen Tissue Bank is the only repository in the world for normal breast tissue and matched serum, plasma, and DNA. We are transforming breast cancer research by offering normal, high-quality, richly annotated tissue samples to scientists worldwide.
