Introducing the KTB Early Life Questionnaire

Early-life characteristics such as childhood body shape, pubertal timing, and growth spurts are factors that have been previously identified as being related to a woman’s likelihood of developing breast cancer later in life. Now, several KTB researchers from different institutions have collaborated to compose a validated questionnaire to help determine how early-life development can affect breast cancer risk. The KTB has agreed to incorporate these questions into our current questionnaire.

With your support, and on behalf of researchers who have requested this data, the KTB wants to study whether some features of breast tissue are altered in response to these early-life characteristics. This effort may provide a stepping-stone to developing preventive strategies for breast cancer. In support of this initiative, we would like to collect additional information related to a donor’s childhood and pubertal growth. Incorporating these questions into the current questionnaire that donors complete while at a KTB tissue collection event has already been done. As of our event last November in New York, everyone who participates in one of our tissue collection events fills out this new questionnaire. Now we must concentrate on contacting the approximately 5,000 women who gave tissue prior to November 2017, and ask them to please submit this additional data.

Here is the process we propose to follow: an email will go out to all previous donors as soon as possible, with a target date sometime in May. The email will clearly state the reasoning behind the request and will contain a personal link for the donor, similar to our current system of medical followup. The early life questionnaire will take from 10 to 15 minutes to complete. If there is no response to the email, or if the KTB does not have an email address on file, a street address mailing will be sent, asking the donor to call the KTB offices for assistance in filling out the questionnaire. Any donors whom we are unable to reach through the email or snail mail process will be called by a KTB associate and asked to complete the questionnaire over the phone with guidance from us.

While the KTB apologizes for the inconvenience of this process, we also want to stress how important it is that we have the cooperation of as many of our previous tissue donors as is possible. If you or someone you know donated tissue to the KTB prior to November 2017, please watch for the important email informing you about this new data collection, and complete the questionnaire. We cannot thank you enough for your continued support.