BRCA Research: What is an Inherited Cancer Registry?

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A waffle iron. Champagne flutes. Kitchen gadgets. These are familiar items on the wish list that is a bridal registry. We do not ask the mother-to-be what she needs for the baby. Instead, we just ask where she is registered. Gifts are an important part of major life events like weddings or the birth of a child, but who needs six toasters or a fleet of high chairs? Registries help the giver and the receiver ensure that no one winds up an unwanted gift.

For women in the BRCA camp, there is nothing to celebrate when we are either diagnosed with cancer or decide that prophylactic surgery is the best option. The closest we might come to acknowledging this new chapter in life is a gathering with close female friends to say goodbye to our breasts before undergoing a bilateral mastectomy. Who in their right mind would want a gift registry for that?

It turns out that those who are at risk of hereditary cancer have an opportunity to turn the idea of a gift registry on its head. Instead of being the recipient of a gift, we have the power to give a gift to those who are, or will be faced with this thorny health problem. How?

We can join a registry aimed directly at inherited forms of cancer.

Cancer registries have been around for a long time. In the U.S., the SEER Program of the National Cancer Institute began collecting data in 1973. In 1992, Congress authorized the Cancer Registries Amendment Act that allowed the Centers for Diseased Control to expand and improve cancer data collection systems in conjunction with the SEER Program. Today, about 96% of the U.S. population is covered by a cancer registry. The data compiled by these programs is vital to our understanding of cancer and shapes public policy in countless ways.

I recently completed a survey conducted by the Moffitt Cancer Center through the FORCE web site. They contacted me and have asked if I would consider joining ICARE, an inherited cancer registry program. Seems like a no-brainer to this BRCA1-positive breast cancer survivor. If knowledge is power, combined knowledge is the greatest weapon we have in the development of tools to combat the BRCA problem.

The ICARE Inherited Cancer Registry. This is one gift of mine that will never wind up in the back of a closet, sold at a garage sale or re-gifted.


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