REACH Registry
The REACH Registry works with people who have an inherited risk of breast cancer, as well as their family members. The goals of the registry are:
- To learn how people with an inherited breast cancer risk share their genetic testing results with their relatives
- To learn what family members do with this knowledge, including what steps they take to lower their cancer risk
- To use this information to develop educational resources that encourage family members to get genetic counseling and testing
Contact Us
For questions about the registry, email us or call 713-745-7050.
About Inherited Risk for Breast Cancer
People with certain gene changes, or mutations, may have an increased chance of developing several types of cancer, including breast cancer.
These changes can be passed down from one generation to the next. Relatives of people diagnosed with one of these mutations may also have the genetic change. These relatives include parents, children, siblings and even cousins, aunts and uncles.
When a person is diagnosed with a gene change that can cause breast cancer, they are encouraged to share this information with relatives, who may need genetic counseling and testing of their own.
Health care providers do not know how or if this information gets shared, or how relatives respond to the news that they may have an increased cancer risk.
Information from the REACH Registry will be used to improve relatives’ knowledge and understanding about hereditary breast cancer in their family and increase the likelihood that these relatives get genetic counseling, genetic testing and cancer screenings.
REACH Registry Eligibility
To participate in the study, you must meet one or more of the following criteria:
- Be diagnosed with an inherited genetic change associated with breast cancer, which can include changes to the following genes: ATM, BARD1, BRCA1, BRCA2, CDH1, CHEK2, PALB2, PTEN, RAD51C, RAD51D, STK11 and TP53
- Have a variant of uncertain significance, a type of genetic change that may or may not be connected to cancer
- Have a relative diagnosed with one of these gene changes
How to Participate
If you are an MD Anderson patient diagnosed with a gene change connected to breast cancer, you will be contacted about joining the registry. If you are interested in joining, you will receive an email from REACHRegistry@MDAnderson.org. This email will contain a link to a web page where you can:
- Find information about the study goals
- Read and sign informed consent documents that enroll you in the study
- Complete a questionnaire about how you have shared news about the gene change with family members
The questionnaire takes 15 to 20 minutes and will be sent once a year for five years.
After completing the questionnaire, you will be given the opportunity to provide contact information of family members you have shared the genetic testing results with. We may then contact the family members about joining the registry or providing them with resources to obtain genetic counseling and testing.
Frequently Asked Questions
Do I need to make appointments at MD Anderson to participate in the study?
No. You do not need to attend any appointments to participate in the registry. The informed consent forms and survey are filled out online, and all follow-up communication is conducted online or over the telephone.
If you are a family member of someone with an inherited gene change, you may be given the option to come to MD Anderson for genetic testing and counseling, but this is optional.
What does REACH stand for?
Reach stands for Research, Education and Awareness of Cancer Family History.
Can I participate if I do not have a gene mutation, but a family member does?
Yes. You are eligible to participate in the study if there is a gene mutation in your family. However, at least one member of your family with the gene mutation must also participate in the study.
Do I have to undergo genetic testing to join the study?
No. You are eligible to participate in the study even if you have not had genetic testing. However, at least one family member must have had genetic testing and be a participant in the study.
What if I have a variant of uncertain significance?
Variants of uncertain significance are genetic changes that may or may not cause health problems. These changes are being studied by doctors to determine if they are connected to cancer or other diseases.
People with a variant of uncertain significance can participate in the REACH Registry. We can also provide additional resources that may help obtain more information about the variant.
I have been invited to participate in another research study at MD Anderson. Can I also participate in the REACH Registry?
Yes. Participation in other research studies at MD Anderson does not disqualify you from participating in the REACH study.
Will I receive any data or results from the registry?
No. The goal of this study is to better understand how information on genetic mutations that can cause cancer is being shared among relatives and how individuals with genetic mutations use this information to make decisions about screening and surgeries. Data from the study will not be shared with participants. The results of this research may be published in scientific journals or presented at medical meetings, but your identity will not be disclosed.
Can I start and save the questionnaire?
Yes, you can start the questionnaire, save your progress and finish it later.
How do I contact the study team?
You can contact us by responding to the REACHRegistry@MDAnderson.org email or calling the REACH Registry phone number at 713-745-7050.