Getting Started /

The Cost of Participation

So you may want to enroll your child in a clinical study.

You have asked all the questions and understand what will be involved. You’ve met the team and feel comfortable about what you are asked to do and the amount of time it will take.

But you may still have questions about cost. Some information may be in the informed consent form, but it is always good to ask the following questions:

  • Will I have to pay for travel (gas, or a bus, subway, or cab fare) and parking?
  • What if I need a sitter for my other children?
  • Are there funds to help me if I have to miss work without pay?
  • What if there is an overnight stay?
  • Will meals be provided?
  • What will the study pay for and what is my insurance expected to pay for, if I have it?

These are practical questions. But they are as important as the study facts that you need to know. Be sure to ask!

Find out whether there are costs when you get a study medication and what happens when a study ends—do you need to pay for medicines, for instance? There is no single answer because it depends a lot on the study. But getting the details is the best way to make sure that your participation in a study is successful.

The study team will want to make it as easy as possible by working with you to do things like scheduling study visits at times when you will already be seeing the doctor. There may be other things that can make participating in the study convenient, so it is important to ask.

"You need to talk to the research team ahead of time and see if they can reimburse you for [certain] expenses. In some cases they may; in some cases they may not. But that's something that you should think about right up front, and talk to the research team."

Tasmeen Singh, Research Coordinator

"The best thing is to try to get the information as early on as you can, in making decisions for your children."

Dr. David Wendler, Clinical Bioethicist

"In some cases, I've taken my crew and my equipment and gone to their home in the evening. So we can make it a little bit more convenient for them."

Victoria Pemberton, RN, Research Nurse

Terms You Should Know

Informed Consent: A parent’s guide to learn key facts about a research study.