Kids-HD Study (US only)
HDYO has more information about HD available for young people, parents and professionals on our site:
What is the study?
The Kids-HD study is a brain imaging study run by researchers in the Department of Psychiatry at the University of Iowa Hospitals and Clinics. Our research is about kids who have a parent or a grandparent who has Huntington Disease. Huntington Disease (or HD) is a brain disease that is passed through families, so someone with a parent who has it is at risk of having it someday, too. HD causes parts of the brain to stop working like they should. Usually, this happens when a person is already grown up, but some people might have small problems in their brain for a long time before any bigger problems start. This study will try to find those early, small problems and measure them.
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 a lot of puzzles and brainteasers, quizzes, and activities like walking silly or standing on one foot. It takes about 6-8 hours to get it all done, kind of like a school day. Kids who participate are paid for their time and work.
How will the results of this study help?
We hope that someday this study will help explain how HD can change the way a person’s brain grows during their whole life. If we can find and measure the earliest changes in the brain and figure out when they usually happen, we hope that it will help other doctors and scientists find new ways to tell if a person has HD and make better ways to treat it sooner.
Who can participate?
Kids who are between the ages of 6 and 18 and who have a parent or grandparent with HD can participate in our study. Kids who have already participated can come back in a year or two for another visit to do the same tests, if they want to.
How to participate?
If you are interested in our Kids-HD study, you can call our toll free number: 1-866-514-0858 or you can send us an e-mail at: firstname.lastname@example.org
There are also two people you can call and talk to about it:
- Joyce Goins, PhD at (319) 467-5519 and
- Sonia Slevinski, MS at (319) 353-8529