Rays of Hope Breast Research Registry growing


For the Recorder
Published: 8/10/2018 11:45:10 AM

Back in 2011, Rays of Hope, a Springfield-based charity, provided $1.5 million in funding to help establish the Rays of Hope Center for Breast Cancer Research. One year later in 2012, steps were taken to create the Breast Research Registry — for patients with breast cancer and other breast problems — a database that today is gaining recognition as a unique research source.

The center has its main offices and laboratories at the Pioneer Valley Life Sciences Institute within the campus of Baystate Medical Center in Springfield. PVLSI is a joint initiative between researchers from Baystate and the University of Massachusetts Amherst.

D. Joseph Jerry, a UMass professor and scientist with a doctorate from Pennsylvania State University, and I, a medical oncologist, serve as co-directors of the Rays of Hope Center.

Our vision was an ambitious one. At the time, it was the first research database with information from consenting Baystate patients that would link personal histories to medical records and fresh tissue samples to related clinical data.

The small samples of both normal and tumor tissue would be taken with permission during surgeries for breast cancer and other breast issues, and preserved for research use in PVLSI laboratories.

In June, the registry reached an enrollment of more than 1,000 patients. Their data includes some 300 samples of fresh tissue that can be used by researchers like Sallie Schneider, director of PVLSI’s Biospecimen Resource and Molecular Analysis Facility, for investigations into how cells change, for example, when exposed to certain environmental toxins thought to cause cancer.

This is what makes the registry unique — the access to such a large number of fresh tissue samples that can be grown and studied for genetic variations. These samples could help researchers answer such questions as “Why does one patient’s cell line develop breast cancer when exposed to a certain chemical while another patient’s cell line does not?”

The answers are key in delivering better individualized treatments for patients as well as helping to understand changes in cells that might cause different types of breast cancer in both men and women.

The registry has already been instrumental in helping researchers — led by the work of Jerry, whose projects include investigating the effect of pregnancy on breast cancer — receive a five-year, $3.5 million federal grant as well as a $1.5 million grant.

Its use in research has been highlighted in five publications, and interest is ongoing in collaborations with institutions outside the Pioneer Valley.

The creation of the registry represents an enormous collaboration in terms of the array of people and their backgrounds involved in its creation and management, and the review of studies to be done with its data.

These include UMass epidemiologists, Baystate surgeons, radiologists and pathologists, nurse navigators, who identify patients, and Baystate Regional Cancer Program clinical research staff who get permissions and ensure regulatory requirements are met and, of course, the patients who agree to participate.

Patients must give consent to allow left-over tissue from the surgery to be taken as well as about two teaspoons of blood. They must also give permission for researchers to access health information from medical records as well as answers to a questionnaire about lifestyle and family history.

Data in the registry is coded so that no personal information is released and can only be accessed by individuals authorized to do the research.

Participants in the registry may not benefit directly, but the information in the database allows for different types of clinical, scientific and applied research. The information will benefit those yet to be identified with breast cancer. This is something for which all of us involved in creating and utilizing the registry are forever grateful.

The Rays of Hope Walk & Run Toward the Cure of Breast Cancer will hold its 25th annual walk Oct. 21. Over the years, it has raised more than $14 million for breast programs and services in western Massachusetts that are administered through the Baystate Health Foundation in partnership with the Baystate Health Breast Network.

More information about the registry is available by calling 413-794-3186.

Dr. Grace Makari-Judson is co-director of Rays of Hope Center for Breast Cancer Research with the Baystate Health Breast Network.


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