FAQ

Where are we today?

• We are currently following up with all of our participants for updated personal and family health information and we appreciate your responses so far! If you have not received a questionnaire, we may not have your latest contact information. Please call or email us, so we can keep you involved with our research!

• Additionally, we have recently been funded to pursue new tumor markers, and may contact you for permission to collect pathology information from your health care provider.

• With your help, we have published some interesting findings using data from the Metropolitan New York Registry. Please visit our ‘Recent Publications’ for more information.

 

Why is it important for me to continue participating in the Metropolitan New York Registry?

• Approximately 124 per 100,000 women are diagnosed with breast cancer in the US every year. Information you provide the Metropolitan New York Registry is a valuable source of data for researchers. It is important for us to continue collecting information on changes in your health since you began participating to identify new avenues for prevention, detection, and treatment of breast cancer. It is also important for us to know if there have been no changes among you and your family.

 

What is the purpose of the follow-up questionnaire? How often will I have to do this?

• We will ask you to complete a follow-up questionnaire approximately every 1-5 years. Providing regular updates on changes in your health and your family’s health helps researchers address new hypotheses about breast cancer risk factors, which can help guide innovative points of intervention and treatment.

 

What are the benefits of participating?

• You will be kept informed of new research findings through newsletters and our website.
• You will have the satisfaction of contributing to important studies that may help you and your family, and future generations.

 

I would like to obtain genetic testing and/or counseling for myself or a family member.  Can the Registry provide assistance?

• The Metropolitan New York Registry is no longer funded to provide genetic testing for participants.  However, we are more than happy to assist you with resources and referrals.  Please visit contact us for more information.

 

I recently moved or changed my phone number or email.  How do I update my contact information?

• Please give us a call at 1-855-34-FAMILY or email us at info@metronyregistry.org with your updated contact information.

 

Who can join the Registry?

• We are currently expanding the families that already participate with us. If you have a family member who is interested but has not joined our study in the past, we would be happy to send them introductory materials inviting them to join.

 

What is expected of me and my family as participants in the Registry?

• Completing questionnaires on your family’s history of cancer, your personal health history, and lifestyle and dietary habits
• Contributing a small samples of blood
• Answering a follow-up questionnaire approximately every 1-5 years
• Permitting us to request medical records on cancer diagnoses
• Permitting us to obtain samples of tumor tissue
• Inviting other relatives to join the Registry

 

Will I be told the results of any research conducted using the information I provide to the Registry?

• Research summaries and relevant clinical findings using Registry data and specimens will be available to you through the annual newsletters offered to Registry participants and on our website under Research then Recent Publications. You can view the entire list of publications from the Breast Cancer Family Registry at http://www.bcfamilyregistry.org/publications.   

 

How is my privacy protected?

• Your name will never be linked with the information or samples you provide. A code will be assigned and will be used on any information or samples provided to approved researchers. A complete description of the Registry’s confidentiality measures are available under the tab ‘Confidentiality’.