M43 — October 2012 — Colon Cancer Family Registry
Intro: For the past 15 years, the National Institutes of Health has funded a collection of data from close to 40-thousand colon cancer patients and their families. It's called the Colon Cancer Family Registry and the information is used by researchers around the world to learn more about the disease. But recently that funding has ended, and some doctors at Mayo Clinic are working to find continued support for the registry in hopes of saving lives.
In 1969, two weeks before they walked on the moon, I was diagnosed with colon cancer.
Since then Keith Warner has fought cancer a total of four times. All because of a gene that runs in his family.
My family has a long history of cancer.
Keith's daughter Linda has battled cancer twice.
In 2011 I had colon cancer.
And kidney cancer. They have what's called Lynch syndrome, marked by a gene that significantly increases their risk of getting colon and other types of cancer.
I might get cancers but they'll be caught early and that what counts.
Both Linda and Keith are screened often to help find cancers early while they're still curable, and they both enrolled in the colon cancer family registry.
This is the largest scale registry in the entire world for colorectal cancer.
Mayo Clinic doctor Pamela Sinicrope [Sin'-ih-croap] says data from this registry is used by many types of researchers worldwide.
We need ways to better understand the disease so we know what causes it, how we can prevent it, and how we can do a better job of treating people with colorectal cancer.
High risk colon cancer patients and families who enrolled in the confidential registry give a sample of blood, medical histories and information about lifestyle choices such as smoking, exercise and the foods they eat. Then they're followed over many years. Dr. Noralane [nora-lane] Lindor says keeping this registry funded is key to finding new ways to fight colon cancer.
The value of having a registry that goes on over time, particularly a family-based registry in which all relatives have a little increased risk because there's already been a colon cancer in the family, is that this group is probably more likely to reveal to researchers what the lifestyle or genetic factors are that made that family more likely to develop colon cancer.
Information that could help keep people like Linda and Keith, their families and many others healthy and cancer-free.
For Mayo Clinic News Network, I'm Vivien Williams
Right now, the Colon Cancer Family Registry is closed for new enrollment. But the information there is still available for researchers to use. Both Drs. Lindor and Sinicrope hope more funding will become available to keep this resource available and accessible to researchers, as it documents all aspects of colon cancer. They say the value of the registry is priceless and if it didn't exist, many researchers would not be able to recreate the data because it would be too expensive.
Colon cancer is the third leading cause of cancer deaths, but it's curable if caught early.
If you'd like to learn more about the colon cancer family registry or colon cancer, visit our website at…
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