Age-Appropriate Explanations for Talking to Your Child About a Clinical Trial Closure

Things to Consider During This Discussion

• Have this conversation at a low-stress time for your child: Make sure all their basic needs (hunger, sleep, comfort) are met so that they have the best opportunity to process what you're saying. Especially for younger kids, it is perfectly normal to discuss these things while playing.

• Use familiar language: These scripts are examples and should be adapted using words your child already knows. For example, do you usually say clinical trial visits or research study visits?

• Personalize the experience: This news will affect each child differently. Use specific examples from your child’s experience.

  • Did they enjoy traveling and will miss it?

  • Did they dislike certain visits, which you can now frame as something they no longer have to do? Making these connections helps the information feel more relevant and understandable.

• End on a positive note: It’s important to acknowledge disappointment or sadness, but as the emotional guide in the conversation, also highlight your child’s growth, courage, and their meaningful contributions to FOP research.

For Teens (12–18 Years Old)

You know that clinical trial you were part of, the one testing a medicine to try to stop extra bone from growing? The scientists reviewed all the results from everyone involved (over 100 people, including many kids and teens like you).

The good news: The medicine was safe, and there were no major concerns about if it was having a negative effect on you.

The hard news: It didn’t slow down extra bone growth as much as everyone hoped, which was the main goal of the trial. Because the trial's goal was to stop extra bone growth, the company decided to stop the trial.

I know this really stinks. You put in so much effort—travel, scans, taking pills—and it’s frustrating when it doesn’t lead to the outcome everyone wanted. But here’s the important part: because of kids like you, doctors learned a lot about FOP. This knowledge will help researchers design better studies and treatments in the future. There are still other studies going on right now to see if another drug works better to stop FOP. Even if it doesn’t feel like a win right now, you helped move science forward.

That means we'll be talking to the doctors who led the trial about stopping things like {insert examples of challenging parts of the experience}. We’ll continue working with our doctors at {insert name of local healthcare providers} to make sure you get the best possible care.

If you’re feeling disappointed or have questions, I’m here to talk. It’s okay to be frustrated. We’ve learned so much from this experience, and we’ll keep looking for answers together. 

For Children (8-12 years old)

You know that clinical trial you were part of, the one testing a medicine to see if it worked well to try to stop extra bone from growing? The scientists reviewed all the results from everyone involved (over 100 people, including many kids and teens like you).

The good news: The medicine was safe, and we know it wasn't hurting you.

The hard news: It didn’t do its job to slow down extra bone growth as much as it needed to. The scientists don't want people to take a drug that doesn't work, and so they are going to stop the trial.

I know this really stinks. You spent a lot of time doing things to help scientists figure out if this drug worked. But here’s the important part: because of kids like you, doctors learned a lot about FOP and what doesn't work to stop it.

This knowledge will help researchers design better studies and treatments in the future. Other scientists are working right now on other drugs to see if they work better. Even if it doesn’t feel like a win right now, you helped move science forward. 

That means we'll be talking to the doctors who led the trial about stopping things like {insert examples of challenging parts of the experience}. We’ll continue working with our doctors at {insert name of local healthcare providers} to make sure you get the best possible care.

How are you feeling about this news? It’s okay to be frustrated. We’ve learned so much about how strong we are as a family from this experience, and we’ll keep looking for answers together. 

For Younger Children (5-8 years old)

You know the trial you are a part of for FOP kids? The one where we would visit {insert trial doctor's name, hospital or identifier}. 

The scientists looked at all the information from lots of people who were in the trial about how they were feeling when they took the medicine.

What they found is that the medicine isn't working as well as it should. This is not because of anything you did! We knew there was a chance this drug wouldn't work, and you helped them find out the answer.

Because the medicine doesn't work, they are going to stop doing that trial. We will talk to {insert trial doctor's name, hospital, or identifier} about being all done with those visits.

We'll keep visiting your doctor at {insert doctor's name, hospital or identified for your local healthcare provider} for all the doctor help we need!