800-616-8347

Link to National CGN Website

The Northwest Cancer Genetics Network Help us understand more about inherited cancer risk

What is the NWCGN Registry?	What are some benefits of being included in the NWCGN?	Who can participate in the NWCGN?
What are participants in the NWCGN asked to do?	How is my confidentiality protected?	What are some of the questions that the NWCGN is trying to address?
Who is conducting this study?	How can I participate in the NWCGN?	Have more questions about cancer?
Print this NWCGN Brochure	Link to National CGN Website	Other Regional CGN Centers
	CGN Resources for Outside Investigators & Collaborators

What is the Northwest Cancer Genetics Network (NWCGN) Registry?

The Northwest Cancer Genetics Network (NWCGN), funded by the National Cancer Institute, is a resource to help researchers answer important questions about inherited risks for cancer.

Information is being collected from people at all levels of risk from across the Northwest and entered into a confidential database. This information is combined with information from other centers to build a national registry that scientists are able to use for research on cancer. As specific cancer research studies are developed locally and across the country, the NWCGN invites eligible people enrolled in the registry to participate.

What are some benefits of being included in the NWCGN?

• You can help researchers and society learn more about genetics and cancer.
• You will be informed about special research studies for which you are eligible.
• You will receive regular updates on research on cancer and genetics.

Who can participate in the NWCGN?

We are seeking information from people who are at different levels of risk for developing cancer, from very low to very high, to better understand why cancer happens.

Interested persons between the ages of 18 and 74 are initially eligible to participate in the NWCGN.

The specific groups include:

1. People who have developed cancer and their close relatives
2. People who are concerned about developing cancer
3. People from the general population who have no known risk factors for developing cancer.

Volunteers like you are at the core of this network. The quality of the research depends on having as many individuals participate as possible. By being a part of the Cancer Genetics Network, you will be an important partner in the battle against cancer.

What are participants in the NWCGN asked to do?

Participants are asked about their medical and family history. Initial enrollment in the study occurs by telephone and takes about 30-40 minutes. Periodically, you will be contacted with a follow-up survey to make sure the information stays up to date. Researchers use the NWCGN database to identify individuals for research studies.

Depending upon your family or medical history, you may be asked to participate in specific research projects. These projects may include additional questionnaires, educational activities, a blood sample, or providing permission to review certain medical records. When study opportunities come up for which you are eligible, you will be asked if you are interested in participating. You can always decline.

How is my confidentiality protected?

Keeping information confidential is an essential part of the registry. Participation in the registry and any personal information you provide remains strictly confidential as required by law and our research protocols. Any information that can identify you is separated from any other information before it is entered in the database. Your name will never be used without your permission. If any researcher wants to invite you into a study in which additional information will be collected, a member of the local network staff will first contact you.

What are some of the questions that the NWCGN is trying to address?

Scientists are using the NWCGN to answer questions about cancer and genetics. Examples of questions that researchers want to study include:

• How common 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?

Who is conducting this study?

The NWCGN is a collaborative project of the:

• Fred Hutchinson Cancer Research Center
  
• University of Washington Medical School.

Other NWCGN partners are the:

• Washington State Department of Health
• Providence Health System
• Pacific Northwest Regional Genetics Group
• Cancer Information Service- Pacific Region.

For more information, contact the NWCGN project line at 1-800-616-8347 or read more on this website.

How can I participate in the NWCGN ?

For additional information, contact the:

NWCGN 1100 Fairview Avenue North, MW801 Seattle, WA 98109-1024 Toll-free 1-800-616-8347

Or link to the "How to Participate" page on this website.

Have more questions about cancer?

For additional information on cancer, contact the

Cancer Information Service , funded by the National Cancer Institute at 1-800-4-CANCER

Print the NWCGN Brochure

The text in this web page is taken from a trifold color NWCGN brochure entitled "Help Us Understand More About Inherited Cancer Risk". This brochure can be viewed and printed in Acrobat PDF format below.

To view and print these documents, you will need a copy of Adobe Acrobat Reader software, available without charge from Adobe Systems Incorporated (download from here) .

• Complete NWCGN Brochure
  
  
• NWCGN Brochure- 1 Page Version
  
  

National CGN Websites

Link to the National Cancer Genetics Website
	Link to a second National Cancer Genetics Website from the Division of Cancer Control and Population Sciences (DCCPS)

Regional Centers in the CGN Network

• Northwest Cancer Genetics Network (Fred Hutchinson Cancer Research Center, Seattle, WA)
• Carolina-Georgia Cancer Genetics Network (University of N Carolina, Chapel Hill; Duke University Medical Center, Durham; Emory Univeristy, Atlanta)
• Georgetown University Genetics Network (Georgetown University Lombardi Cancer Center, Washington, DC)
• Mid-Atlantic Cancer Genetics Network (Johns Hopkins University, Baltimore; Greater Baltimore Medical Center, MD)
• UCI Cancer Genetics Network (University of California, Irvine);
• University of Pennsylvania Cancer Genetics Network (University of Pennsylvania, PA)
• Texas Cancer Genetics Consortium (Southwestern Medical Center, Dallas; Baylor College of Medicine, Houston; University of Texas Health Science Center, San Antonio; M.D. Anderson Cancer Center, Houston);
• Rocky Mountain Cancer Genetics Coalition (University of Utah, University of Colorado, Univeristy of New Mexico).

CGN resources available to outside investigators/collaborators

• http://hedwig.mgh.harvard.edu/cgn/public The CGN Statistical Coordinating Center Public resource for scientific collaborators.