The Road to a Longitudinal Study

Announcement! The Komen Tissue Bank has become a longitudinal study! What does that mean? According to, a longitudinal study “ is an observational research method in which data is gathered for the same subjects repeatedly over a period of time. Longitudinal research projects can extend over years or even decades.” So…wait a minute. Doesn’t this already apply to the KTB? In some ways it does. When we first began over 10 years ago, the KTB had neither the staff nor the infrastructure to launch a medical follow-up effort. Medical follow-up increases the value of the gift of your tissue, and involves remaining in contact with clinical trial subjects on a regular basis and updating medical history, so that researchers are able to have access to a fuller picture of the sample they are studying.

In 2014 the KTB was able to begin contacting our donors for updates. By making follow-up a goal, the KTB started the ball rolling toward what is now an official designation as a longitudinal study. For the past three years we have been reaching out to our donors on a regular basis (once a year in their birth month) to answer some very simple, short questions. Now, however, as we officially evolve into a longitudinal study, we will redouble our efforts to make successful annual connections with our donors one of our main goals. Important well-established longitudinal projects like the Nurses Health Studies, the Black Women’s Health Study, and the Framingham Heart Study have been informing groundbreaking research for years. The KTB wants to share in that legacy, but we need your help.

How does our medical follow-up system work? We begin with an email that goes out in the donor’s birth month, and that clearly states the purpose of following up and updating the medical history. The email contains a unique, personal weblink to a questionnaire for the donor to complete. The medical follow-up questionnaire will take from 1 to 5 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.

Currently the KTB has made successful contact with only 45% of our tissue donors for follow-up. We have set a goal to receive completed medical follow-ups from at least 60% of tissue donors in the next few years; in fact, reaching this goal is critical in ensuring future grant funding. We reapply for our grant from Komen every year. How you can help: make sure the KTB has your current and correct email address; be sure to watch for an email from us during your birth month; respond to that email in a timely manner, and encourage other tissue donors you may know to do the same. The gift of your tissue is very precious to us; please help us protect it by helping us find you. It is one of the most important things you can do.