Thursday, October 7, 2010

Jewels In Our Genes - Study for African American Breast Cancer Survivors

Just received the following email from the Army of Women, part of the Dr. Susan Love Research Foundation. Sounds like an important study to understand breast cancer risk in AA women.

As you may know, October is National Breast Cancer Awareness Month. This is the perfect month for the Army of Women members to shine! Some of you may be thinking, "What can I do to help? How can I make a difference?" Well, the Army of Women has the answers for you! To start, read on to learn about an exciting breast cancer research study that needs African-American breast cancer survivors AND their female relatives with a history of breast cancer, from ANYWHERE in the US. If you are a breast cancer survivor, see how you can participate. If you are NOT a breast cancer survivor, but have relatives who are, take action and invite them to join the Army of Women and let them know about this study today! The researchers need them–and possibly you, too! Together you may be able to take part in important research investigating the higher rates of breast cancer in young African-American women. Read on to learn how.

If you aren't able to participate in this study, you can still do YOUR part: forward the Call to Action to someone you know who might be interested. As a member of the Army of Women you have an important opportunity to accelerate breast cancer research by forwarding our e-blast and helping to fill this study. And that's not all! YOU can make a difference by inviting your friends, family, colleagues–ANYONE you know over the age of 18–to join the Army of Women. Together, we can reach our goal of ONE MILLION strong!

Women of African ancestry living in the United States have higher rates of premenopausal breast cancer than women of European ancestry. They are also more likely to die of breast cancer. Is it possible that there are certain hereditary genetic mutations that may explain why? A research team at the University at Buffalo thinks the answer is yes. And they need African-American women who were diagnosed with breast cancer of any stage, including metastatic disease and DCIS, to help them find out.

This study is open to African-American breast cancer survivors in the United States who have at least one living blood relative (mother, sibling, cousin, grandparent, niece, etc) who is also a breast cancer survivor. There is no time limit since diagnosis and it is OK if you are currently receiving treatment. If you are interested in learning more, please read on!

What's the study about?

The research team is searching for new genetic risk factors for breast cancer in African-American women by studying DNA from women who have been diagnosed with breast cancer, their female relatives who have had breast cancer, and possibly also their female relatives who have not had breast cancer. They are also going to investigate whether there are similarities in tumor type that develop within the families that take part in the study.

What's involved?

If you agree to participate in the Jewels in Our Genes study you will be contacted by phone to answer questions about your breast cancer diagnosis and your relatives who are also breast cancer survivors. If you appear to be eligible and you decide to join the study, you will be asked to provide a small sample of saliva so that the researchers can collect your DNA. This involves spitting into a tube. The researchers will mail you a saliva collection kit, which will include detailed instructions on how to collect the sample and return it to the researchers. You will mail the kit back to the researchers, at no cost to you.

You will also be asked to complete a short questionnaire about your health, lifestyle, and family history of breast cancer. The questionnaire will be mailed to you and you will mail it back to the researchers, at no cost to you. You will also be asked to give the research team permission to access your medical records, which will be used to confirm the type of breast cancer you had.

Finally, you will be asked to help recruit your relatives who are breast cancer survivors into the study, and also possibly one relative who has not been diagnosed with breast cancer. Based on the information you provide in the questionnaire, the research team will decide which of your relatives you should invite to join the study. You will receive a letter in the mail asking you to provide these family members with a copy of the study brochure and to ask them to call the research team if they would like to participate.

The researchers need to enroll up to 150 families, or approximately 400 women, in this study.

Who is conducting the study?

Heather Ochs-Balcom, PhD, University at Buffalo, Buffalo, NY

Where?

Anywhere in the United States, all necessary participation is handled through the mail.

Who can participate?

You can join the Jewels in Our Genes study if you match ALL of these MAIN categories:

• You are a woman older than 18 years of age

• You consider yourself to be Black/African American

• You were diagnosed with breast cancer of any stage, including metastatic disease and DCIS. There is no time limit since diagnosis and it is OK if you are currently receiving treatment.

• You have tested negative for the BRCA 1 and 2 mutations (if known - if you do not know your status, you can still participate in the study)

• You have at least one living female blood relative who was diagnosed with breast cancer of any stage, including metastatic disease and DCIS. The relative can be first degree (mother, daughter, sister) or second degree (cousin, grandparent, aunt, or niece). There is no time limit since diagnosis and it is OK if she is currently receiving treatment.

• You live in the United States

After you RSVP, the researcher will ask you additional questions to be sure that this study is a right fit for you.

Link to RSVP