How to Participate

What We Do

The Texas Cancer Genetics Network (TCGN) recruits interested individuals who are at moderate to high risk for genetic susceptibility to cancer. Also, the network recruits individuals with no known increased risk to serve as controls.

How You Can Help

If you have had cancer or have a family history of cancer, you can become an important partner in the battle against this disease. If you choose to be a part of the TCGN, we will initially ask you about your health status and that of your family members. Based on your answers, we may invite you to participate in various Cancer Genetics Network (CGN) projects through the TCGN.

• Participation is voluntary
• Declining participation will not affect participants’ health care at MD Anderson Cancer Center
• If participants no longer wish to participate, we encourage them to contact us. We will then destroy all of their personal and family records
• Participation is free of charge, but some activities outside the network, such as genetic testing and counseling may require payment

Participation Requirements

Individuals who wish to participate must sign an informed consent form and agree to the following:

• Complete a 30-minute baseline questionnaire by either mail or telephone
  
  Participants will be asked for personal information such as name, address, family history of cancer, personal medical history and lifestyle.
  
  
• Allow us to contact participants once a year (follow-up) to update participants’ information and ensure continued participation
  
  
• Allow contact about future cancer genetics research studies
  
  If participants qualify for any national or local cancer genetics studies, we will contact them to determine whether they are willing to participate in them.
  
  
• Sign a separate informed consent form for each future study agreed upon

Confidentiality

MD Anderson makes every effort to maintain participants’ confidentiality. Participation in the TCGN and any personal and family information provided by participants will remain strictly confidential as required by law. Any information that can identify participants is removed from the data we transmit to the CGN Coordinating Center at Massachusetts General Hospital (MGH). Participants’ names are never used without their approval.

The CGN study includes a certificate of confidentiality (COC) issued to MGH by the National Institutes of Health to protect identifiable research information collected during the course of the study. The COC protects participants’ information from forced disclosure in any civil, criminal, administrative, legislative or other proceeding at the federal, state and local levels. The COC is an important tool for protecting the privacy of research study participants.

Personal and family identifiers (name, birth date, mailing address, e-mail address, medical history, etc.) are stored in computer files in a password-protected database and on paper files kept locally in locked filing cabinets in a locked office. We label all collected samples with unique participant identifiers.

Participant Follow-Up

Once an individual has agreed to participate in the study, he or she is contacted annually to update personal and family information provided at the time of enrollment. We recently implemented self-service follow-up to enable participants to update their information online. However, a personalized hard-copy follow-up questionnaire can be mailed in the event that the participant chooses not to use our Web site.

Biorepository Study

MGH received approval from the NCI and the CGN Steering Committee to create a biospecimen repository for current and new CGN participants. Previously, the TCGN did not collect and store biospecimens from registrants. However, we are now inviting volunteers to participate in this biospecimen repository. For more details, please contact us by telephone at 1-877-900-8894 or by e-mail at humancancergenetics@mdanderson.org.

Benefits

The TCGN facilitates collaboration among leading clinicians, basic scientists, epidemiologists, genetic counselors and community organizations.

MGH will coordinate the CGN data-collection efforts for one of the most comprehensive human cancer genetics research databases ever created. The database will contain data on hundreds of thousands of people who are genetically predisposed to cancer as well as tissue samples, educational materials and other resources designed to increase understanding of the genetic basis of cancer.

Participants may not directly benefit from the study, but their participation may help the discovery of information that will potentially benefit future patients with cancer and/or their family members.

Participants will receive the following:

• A free newsletter with information on cancer genetics and new research studies within the CGN-TCGN
• Referrals for genetic counseling and testing, if interested
• Educational materials about cancer
• Information about special projects that may be of interest