What is the Kids-HD 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. The research focuses on children ages 6-18 years of age who have a parent or a grandparent who has Huntington Disease (HD) and are thus at risk for developing HD themselves. 


The primary research interest of the Kids-HD project is to evaluate the effects of the CAG repeat in the Huntingtin gene (HTT) on the developing human brain.  Although HD is a disease that typically manifests in adulthood, many lines of research have supported the notion that there is an important component of altered brain development to the disease etiology.   Evidence of functional abnormalities in pre-manifest HD (pre-HD) have shown that pre-HD subjects exhibit abnormalities in brain structure, cognition, behavior and motor function long before (up to 20 years) a clinical diagnosis is given.   Some researchers suggest that these changes are due to early degeneration.  However, an alternate explanation is that these subtle changes are a result of abnormal brain development and are present throughout life because the HD mutation is present from conception and could impact normal, early developmental processes.


The Kids-HD study is designed to evaluate brain structure (using Magnetic Brain Resonance Imaging or MRI) and brain function (cognitive, behavioral, and motor skills) in children at risk for HD.  For research purposes only, the participants provide DNA (through either blood or saliva) and the CAG repeats in the HD gene are quantified.  This data is used for research purposes only.  The results are not revealed to parents, participant, or any member of the research team.  The determination of CAG repeats allows them to compare those children who are gene non-expanded or GNE (< 39 CAG repeats) to those who are gene-expanded or GE (> 40 CAG repeats).  An additional comparison group is healthy children (HC) with no family history of HD.


What are researchers trying to learn?

They hope that someday this study will help explain how HD can change the way a person’s brain grows during their whole life. If scientists can find and measure the earliest changes in the brain and figure out when they usually happen, it should assist clinicians and scientists in their search to find new ways to tell if a person has HD and help identify the earliest biological pathways that are altered by mutant huntingtin.  These pathways could be ideal candidates for therapeutics to delay the onset of HD.


How do they study the brain?

They 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, they will use a special scan called Magnetic Resonance Imaging (MRI) to take a picture of it. An MRI can reveal structural readouts, such as the size and shape of different brain regions.  To get an idea of how someone’s brain works, they measure how they think and remember things, how they move and maintain balance, and what they think of themselves and other people. To do this, they make use of puzzles and brainteasers, quizzes, and activities like walking in silly ways or standing on one foot. 


Who can participate?

Children, teenagers, and young adults who are between 6 and 18 years old and are at risk for HD are eligible to participate in this study.


 “At Risk” means someone who has a parent or grandparent who has HD.


How to find out more…

1)      Try the website: www.kids-hd.org

2)      Visit them on Facebook: https://www.facebook.com/KidsHd

3)      Call their toll free number: 1-866-514-0858 or send them an e-mail: kids-hd@uiowa.edu

4)      There are also two people you can call and talk to about the study:

Joyce Goins, PhD at (319) 467-5519

Sonia Slevinski, MS at (319) 353-8529