Registry Retention (Or, "Bonus Patient Years Acquired!")

At times, it’s boggling to think of how clinical trial patients can disappear. They voluntarily sign up to participate and receive reimbursement for their time. Some withdraw through lack of interest, despite the best intentions. Some leave without saying goodbye. We want them back.

One of our observational registries utilizes several platforms to track participants. Unlike clinical trials that put parameters on how a physician may treat participating patients, a registry collects data and observes. We provide six points of contact for the participant to complete a survey.

• The participant receives a reminder email a month before a survey is due. The reminder provides a link where the survey can be completed online.
• If an online survey is not completed, a reminder postcard is mailed as notification that a survey will be arriving in two weeks. The website address is provided again, along with a phone number that allows the participant to complete a survey over the phone.
• If they have not completed a survey online or over the phone, it is mailed to them.
• Based on the date that the survey was mailed, the participant will receive up to three reminder calls to encourage them to complete it.

If the participant has not completed two sequential surveys covering a year, another call is placed, which makes a seventh point of contact. We don’t want to lose them. We will utilize other resources to track down additional addresses and phone numbers.

                      Patient years reclaimed from the nonresponder search process (blue line) relative to                                                             patient years accrued from active responders (red line).

I admit to a little thrill of joy every time we reclaim a participant. It means that our efforts bear results. Sometimes we receive a survey in the mail, I notice when the last one was received and think “Wow, we haven’t received one from them since 2009. Bonus patient years acquired!”

Admittedly, people move, they lose interest or they just ignore their mail. It is important to note that though email reminders, post cards and follow up calls, the majority of patients never leave. For those who do, we search.