When you donated healthy breast tissue to the Komen Tissue Bank (KTB), you gave researchers something incredibly valuable: a snapshot of your breast biology at a particular moment in time. But your contribution did not end on the day you donated. Each year, we ask our study participants to complete a medical follow-up questionnaire. We know it is one more email and one more thing on your to-do list, but taking a few minutes to complete it is really important to the KTB and to the researchers who use our samples. Here’s why...
One of the things that makes the KTB so valuable is that researchers can study normal breast tissue from people who did not have breast cancer when they donated. However, life goes on after donation, and medical histories change. Participants may develop a new health condition, start or stop medications, or experience changes in their reproductive or hormonal history. Some participants may also receive a breast cancer diagnosis in the years following their tissue donation.
Your annual follow-up helps us keep the information connected to your samples accurate and useful. The tissue you donated does not change, but your medical story continues. Researchers want to understand not only what normal breast tissue looks like, but also whether there are characteristics in healthy tissue that might someday help us better understand breast cancer risk.
For example, if someone donated healthy breast tissue and years later developed breast cancer, researchers may have a rare opportunity to study tissue collected before the cancer was diagnosed. By looking at many samples over time, researchers can search for patterns that might help us better understand the changes that happen before breast cancer develops. But we can only know about those changes if you keep us updated.
Sometimes participants wonder whether they really need to complete the questionnaire when nothing has changed. Yes, please! Knowing that you have not developed breast cancer or experienced other important health changes is valuable information, too. Researchers need accurate comparison groups, so knowing who remains cancer-free over time is just as important. Whether something has changed or nothing has changed, your response matters.
A sample collected years ago may be useful for questions researchers could not have asked when you donated. Pair that sample with years of updated medical information, and its research value can become even greater. That is why we keep asking you to fill out that questionnaire! Every completed follow-up strengthens the KTB as a research resource and makes the information connected to our samples even more valuable.
So, when that annual KTB medical follow-up questionnaire arrives in your email, please take a few minutes to complete it, even if you have nothing new to report. If you’d rather “talk it out,” you can always call us and complete the questionnaire over the phone. Also, if you prefer the “old school” method, we will happily send you a paper form by snail mail.
You have already made an amazing contribution by participating in the Komen Tissue Bank. Your annual follow-up is one more simple way to keep that contribution working for research year after year. Your tissue tells researchers part of the story. Your follow-up helps us learn what happens next.
