Information About Our Registry

What is the MACGN Registry?

The registry is a list of people who have had cancer or have a family history of cancer. These people may benefit from receiving information on research in hereditary cancer. The registry is part of a large network which acts as a clearinghouse. It allows people to find doctors who specialize in cancer and helps scientists find people who may be interested in volunteering for research studies.

Your privacy is respected.

Keeping information private is an important priority of this network. If you agree to join, some of your informaiton will be shared with science researchers. However, your name will never be used without your permission, and you can withdraw at any time.

What are some benefits of being included in MACGN?

You will receive up-to-date information on cancer and genes.
You can be referred to cancer specialists if you need help now or in the future.
You may hear about special studies for which you are eligible.
You can help doctors and scientists learn more about why some people get cancer.
It is free.

Who can participate in MACGN?

If you or someone in your family has had cancer, you are eligible to join the registry.
You must be between the age of 18 and 74.

What will you be asked to do?

You will be asked to provide information about your own and your family's medical history. This can be done by mail and will take about 25 minutes of your time.
You must be willing to be contacted about future volunteer studies.
Any information that you provide is kept confidential. The medical information is used only for research purposes.

What are some of the questions the MACGN will try to address?

How commom are the inherited genetic changes that cause cancer?
Why do some people with inherited genetic changes develop cancer and others do not?
How does a person's lifestyle interact with these genetic changes to cause or prevent cancer?
How can we use our new knowledge to help prevent cancer?
How can we improve cancer treatments?
How can people cope better with cancer and cancer risk?

How can I participate?

For more information, contact the:

Mid-Atlantic Cancer Genetics Network
Reed Hall West, Suite 3-306
Toll free: 1-877-880-6188
or, link to the Public Enrollment Form