Barth Syndrome Study

Minor Assent Form (ages 7-12)

Introduction

My name is Melissa Huang, I am a researcher at the Barth Syndrome Foundation. I am collecting information on Barth syndrome and want to learn about you and your family. I invite you to participate.

What you will do in the study

If you want to be in the research study, you or your parent will be asked to:

1. Upload some medical information related to you about Barth syndrome.
2. Fill out some surveys. This can take between 1 to 3 hours.
3. Answer some questions about your height and weight. This will take 10 minutes.

You can do this if

1. Your parent or guardian says this is ok.
2. You have Barth syndrome or thought to have Barth syndrome.

You cannot do this if

1. Your parent or guardian says it is not ok.
2. You do not have Barth syndrome.

I hope to have 300 children in this study.

Risks

There is a chance that you may not like the questions we ask you and that they may make you feel embarrassed or uncomfortable. You have the option to not answer those questions. There is also a small but unlikely chance that your information may be revealed to others. We have protections in place to help make it less likely to happen.

Helping you or others

Being in this study does not directly help you, but the study may help people learn about Barth syndrome. The answers you provide may help researchers, doctors, and members of your family and others with Barth syndrome better understand the disease.

Keeping your answers private

We will not reveal your name or identifying information to others. If your data are shared, we will use a number or code instead of your name. We will keep your answers secure online on the Registry website.

Volunteering

You can decide if you want to do this study or not. It is OK to say yes or no. You will not be in trouble if you say no.

Questions

If you have any questions, please ask me. You or your parent/guardian can contact me at:

Melissa.Huang@barthsyndrome.org; 914-303-6323 extension 6

If you have questions about your rights in the research, please contact the North Star Review Board at info@northstarreviewboard.org.