What is Huntington Disease (HD)?

Huntington Disease (HD) is a brain disease that is passed through families. It causes parts of the brain to stop working like they should. Usually, this happens later in life, but some people might have mild symptoms for many years before they know they have HD. This study will try to find and measure those earliest signs.

Why are we doing this study?

If we can discover the earliest signs of HD, we may be able to recognize the beginning stages of the disease. We hope that being able to recognize signs of HD sooner could lead to earlier interventions and treatments, and maybe even help with prevention.

What do we do?

We study brain structure (different parts of the brain 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 (MRI) to take a picture of it. We can use the MRI 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 like balancing and finger-tapping. We also ask parents to fill out some forms.

What’s an MRI?

Magnetic Resonance Imaging uses a powerful magnet and radio waves to make pictures of what’s inside of your body. An MRI scanner looks like a giant plastic donut with a tunnel in the center. There is a table that slides into the tunnel so that the pictures can be taken.

How does an MRI work?

An MRI scanner uses a big magnet and radio waves to help a powerful antenna see cells in your body. The antenna sends the information to a computer, and the computer translates it into a picture of what the antenna sees inside your body. Since the antenna can tell the difference between different kinds of cells, the picture will show different kinds of body tissues – muscles, bones, and organs all look different! An MRI can provide clear images of body parts that can't be seen as well with an X-ray, CAT scan, or ultrasound.

Does an MRI hurt? 

No, an MRI doesn’t hurt at all. Nothing touches you except special headphones that block the noise of the MRI scanner and let you hear the movie you get to watch while you’re having the scan done.  

Is an MRI risky?

MRIs are safe and easy. No health risks are known about the magnetic field or radio waves, and there’s no radiation. It can be repeated without side effects. Since an MRI uses a very strong magnet, you need to be sure to remove any metal, magnetized or electronic devices before the scan, such as eyeglasses, jewelry, belts, phones or credit cards. You'll also be asked questions to make sure you don’t have metal anywhere else in your body or anything else that might cause a problem near a strong magnetic field. Braces and dental fillings won't interfere with the scan, but braces can make the picture of your brain look fuzzy. 

Why do you need to do genetic testing?

We ask for a genetic sample so that we can compare information from kids who have the expanded HD gene, kids who do not have the expanded HD gene, and kids without HD in their family at all. However, all of the information we gather gets de-identified. This means that anything that could be used to identify a person (like name, birthday, and address) is removed. All results are assigned a random number and never tied to a person’s name. This includes genetic testing.

Will you tell me how I did on the tests?

No results are provided to our participants, their families, or anyone else they might have contact with, like or doctors or teachers. This includes any results from the brainteasers, puzzles and quizzes, genetic testing, or the MRI scan. We do this to protect your privacy and to make sure test results aren’t used for diagnosing anything, because they’re not the right kind of tests to use for that.

How long will it take to participate in the study?

The study visit takes about 8 hours, about as long as a school day.

What if I decide I don’t like something?

Participating in this study is voluntary. This means you decide if you want to do something or not. You can stop participating at any time for any reason.

Who is eligible for the study?

Kids, teens, and young adults ages 6-25 who have a parent or grandparent who has been diagnosed with HD. If your parent is at-risk for HD but has not had genetic testing, they do not need to be tested for you to participate.

Can my parents come if I participate in the study?

Yes! Kids under the age of 18 need to bring at least one parent with them when they participate, but more family members are welcome to come, too: parents, grandparents, brothers and sisters, maybe even aunts, uncles, and cousins! When your parent calls our study staff, we’ll talk about who should come along on your trip.

How do I get to Iowa to participate?

All travel arrangements are taken care of by study staff. We’ll ask when you want to come and how you want to get here. Then, we’ll talk to a travel agent and have every arranged for you. Once everything is planned, we’ll send you an itinerary, which is like schedule for your trip. By the way, all travel-related expenses are reimbursed. This means that some things (like airfare, shuttles, and hotel rooms) will be pre-paid for you, while other things (like meals, gas, or tolls) will be paid back to you.

What’s the difference between the Kids-HD Study and the Kids JHD Study?

Kids-JHD is a little different from Kids-HD because it includes a clinic-like experience for study participants and their families. For starters, Kids-JHD participation takes two days instead of just one so that the scheduling and pace of tests and exams can be more tailored for each young person’s needs and tolerance level. Also, the Kids-JHD study includes a second day to provide consultations with three specialists familiar with JHD: a neurologist, a psychiatrist, and a neuropsychologist. These doctors will review the research testing, perform their own evaluations, and discuss results with the participants and their families. They will write reports and consult with providers back home at the family’s request. Like Kids-HD, Kids-JHD covers travel expenses and all study procedures – this includes the consultations.