Kids JHD


Kids-HD is now ChANGE-HD! Learn more

What is the Kids-JHD study?

The Kids-JHD study is a brain imaging study run by researchers in the Department of Psychiatry at the University of Iowa Hospitals & Clinics. Our research is about young people who are diagnosed with Juvenile Huntington Disease (JHD).

Huntington Disease (HD) causes parts of the brain to stop working like they should. Usually, this happens when a person is already grown up. In rare cases, kids can have symptoms of HD. If this happens, it can take a long time to diagnose JHD because it is often mistaken for something else.

This study will try to identify and measure common symptoms and developmental patterns that might be happening in JHD.

How do we study the brain?

We study brain structure (the different parts and how they’re put together) and function (how all those parts work). To look at someone’s brain, we use a special scan called Magnetic Resonance Imaging (or an MRI) to take a picture of it. We can use this picture to measure lots of stuff, like the size and shape of different parts of the brain. To get an idea of how someone’s brain works, we measure how they think and remember things, how they move and balance, and what they think of themselves and other people. To do this, we use puzzles and brainteasers, quizzes, and activities that measure balance and coordination. 

How will the results of this study help?

We hope that someday this study will help doctors and scientists find new, better ways to tell if a person has JHD and treat it sooner.

Who can participate?

Young people ages 4 to 30 years old are eligible to participate in this study if they have a diagnosis of JHD. 

It takes about 8 hours to participate, which can be done in one day (like a school day) or split up into two shorter days. Study participants are paid for their time and work. 

Travel-related expenses are paid by the study. This means that some things (like airfare, shuttles, and hotel rooms) will be pre-paid, while other things (like meals, gas, or tolls) will be reimbursed. Participants under the age of 18 need to bring at least one parent or guardian with them when they participate. Families with more than one child can make the trip and participate together -- brothers, sisters, and even cousins. Study staff will take care of scheduling and travel arrangements according to each participant’s needs.

The best way to find out more about the Kids-JHD Study is to call our toll free number: 1-866-514-0858 or email us