All participants finish the TEDDY research study with their finial visit at age 15.
What considerations go into ending a study?
I think of ending a study from 3 different perspectives: you have the TEDDY child, the parent(s) and the study clinician. We are not only ending a protocol, but really, while it’s not intentional, we are actually ending a life-long relationship and that’s definitely a tear-jerker.
Emotions aside, there is a careful attention to detail that goes into ending a protocol. “Oh no, what if we miss something?” or “What if we don’t get to ask _____?”. We have actually strategized how to prevent this and put into place a lot of quality assurance checks with the data long before the 15 year visit. We are confident we have done our best.
How should a family prepare ahead of their final visit?
Please talk to your TEDDY child and remind them this is their last visit. How does that make them feel? 15 years is a long time! TEDDY has been part of every stage of their lives so far and now it is coming to an end. Encourage your kids to ask us questions. The TEDDY clinicians will be having these conversations at least a year before the final visit; maybe your discussions beforehand will help identify areas of concern we should address.
If you and your TEDDY child have a preference in your clinician, please let us know so we be sure they are available to see you. Also, please remember to bring in an up-to-date vaccine record and confirm both parents and all siblings have participated in the Parent/Sibling DNA protocol.
Lastly, it would be very helpful for parents and the TEDDY child to complete the End of TEDDY Questionnaire through the TEDDY portal before the visit. Your feedback is very important to us; we don’t want you to feel pressed for time when completing the questionnaire at the visit.
What can a family expect during their final visit?
The staff is booking an hour and a half for the 15-year visit. It is really important to us to be able to celebrate this huge accomplishment with our families! The visit may not take that long, but we don’t want it to be rushed. We want to make sure you all have the time you need as well.
What options are there for families after the final visit?
We recognize families are accustomed to having the close monitoring every 3-6 months. Families have shared concerns that they are not going to have the TEDDY test results anymore. We recommend checking in with us in 6-12 months. We can let you know what research study options we have at the Barbara Davis Center for autoantibody testing. 303-724-7577 teddy.study@ucdenver.edu
Why is it important for the final visit to be at the BDC for those living in the Denver Metro Area?
TEDDY clinics at our offsite locations offer a convenient and quick visit for families. However, it is not going to be enough time for the final visit. Once again, we want to celebrate your child’s accomplishment and we don’t want to be hurried. We recognize that it is a drive - it’s definitely going to take time - but we would just really appreciate that quality time with you and your child. We have Saturdays or we could schedule after school. We will do our best to be flexible since we are asking you to make the drive to Aurora,
How many subjects have graduated from TEDDY to date?
By the time this goes out, there will be over 15 kids completing TEDDY in Colorado!
How do you, as a clinician, feel about the end of TEDDY and saying goodbye to families?
That’s a tough one! OMG! There’s definitely mixed emotions. Professionally, I am SO proud to have been a part something as big as TEDDY...it has truly been an honor to be on this team and contribute to T1D research. Personally, I have treasured this time watching your kids grow up and being part of your TEDDY life. It is hard to believe our first contact could have been as early as 2 months of age when I called to share the genetic results and invited your family to be in TEDDY. I love to see the expressions of your kid’s face when I remind them that we have know each other since they were 3 months old and they were in diapers!
Overall, I feel like we have grown up together. I’m not very fond of goodbyes. So I won’t want to think about it quite yet. For now, THANK YOU for your commitment to T1D research and your dedication to the TEDDY Study.
Tricia Gesualdo has been a lead clinical nurse coordinator for the Colorado TEDDY study since 2004
