Researchers discuss what happens when a study ends and things parents should consider asking.
When a Study Ends
The study is about to end...you've been involved for a few weeks, months, or years. Your child may be on a study drug or treatment. Perhaps the costs for additional medical care were covered by the study. Maybe your child hasn't been to their primary care doctor while they were in the study.
So what do you do now?
There are some important things you'll want to find out...
Who do you ask?
Just as much as the study team was there to help you enroll, they are there to help you when the study ends. Safety and helping you to get back to your regular healthcare, after you have left the study or the study has ended, is very important to the study team. It is important to them that your child remains safe and they will help you to transition off the study. This may mean weaning off of a medicine, helping you get back to your regular healthcare provider or continuing to monitor your child for side effects. Your study team is there to help with this process.
After the study is over
Even after a study ends, there are times when the study team may need to talk with you. Maybe they want to tell you the results of the entire study. Or maybe they want to see if you are interested in joining a new study or a study that will follow the same group of children for a longer time. Sometimes there is a question they forgot to ask you during the study or they may want to discuss a medical or study matter with you. You may also find that you would like to speak with a member of the study team or visit them when your child comes for regular visits. Most study teams will tell you that they become very attached to the parents and children who were in their studies and really enjoy seeing them after the study ends.
"They [parents] need to try to be very clear on how long the study lasts, when it ends, and then when they're getting towards the end, try to work with the researchers and also the physicians at home to try to get as seamless of a transition as they can."
"We do become bonded with our families. We have sometimes had reunions and followed patients for 10, 15, and 20 years. And I think there is a special connection that is created and exists between the study team and the families."