Child to Adult Neurodevelopment in Gene Expanded Huntington’s Disease (ChANGE HD)

The ChANGE HD Study is a multi-site brain imaging study with its main site at the University of Iowa. Our other sites are at Columbia University in New York, Children’s Hospital of Philadelphia, University of Texas in Houston, and University of California Davis in Sacramento.  Our research focuses on young people ages 6-30 who have a family history of Huntington’s Disease (HD). 

HD has long been considered an adult onset disease. However, research has shown that brain changes are evident before motor symptoms begin. In fact, the gene responsible for HD plays a role in brain development and is present throughout the lifespan. With gene knockdown therapy showing promise for the treatment of HD, it is essential to understand how removing or disabling the gene could impact brain development.  We hope this study will help explain how the gene responsible for HD effects brain development, and we hope to find a way to identify the best time for gene therapy during development.

Visit the ChANGE HD website, follow us on Facebook and Twitter, email us at or call us toll free at 866-514-0858.

DM1-Brain Research Study

Myotonic dystrophy type 1(DM1) is a multi-system disease, meaning that it affects many organs in the body.  For many years, DM1 has been considered a peripheral neurologic disease (not involving the brain).  However, patients and families report that the most disabling symptoms of the disease are often cognitive and behavioral, such as low-processing speed, sleepiness, apathy and anxiety, prompting the scientific community to better understand the role of the brain in this disease.  The DM1-Brain Study will try to identify and measure common symptoms and changes in the brain that may be happening in diagnosed DM1 (post onset) and those at risk for DM1 (before onset).  Our hope is that this study might someday help doctors and researchers find new, better ways to treat and diagnose DM1.

Brain Structure and Function in Juvenile-onset Huntington Disease (the JoHD Study)

The University of Iowa is conducting a brain imaging research study for young people ages 4-25 who have been diagnosed with or who may be experiencing symptoms of Juvenile-onset Huntington Disease (JoHD). Huntington Disease (HD) is a brain disease that is passed from parent to child and causes parts of the brain to stop working like they should. Usually, this happens later in life, but in rare cases, symptoms of HD can develop in children. If this happens, it can take a long time to diagnose JoHD 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 JoHD. We hope that someday this study will help doctors and scientists find new, better ways to tell if a person has JoHD and treat it sooner. We hope that the doctors’ evaluations and consultations provided by our study can help with treatment and management of each participant’s symptoms, regardless of diagnosis.  To reach study staff, email or call toll free 866-514-0858.

Preterm Transfusions

An infant of premature birth faces a host of issues; one of the most common medical issues is anemia, or low red blood cells. The most common treatment for this issue is to conduct a blood transfusion. However, there is uncertainty as to what treatment guidelines to use for transfusions: liberal – transfusing early and often; versus restrictive – transfusing later and less often. More specifically, is there any ramifications on brain development between the two strategies? The Peg Nopoulos Laboratory is collaborating with neonatal physicians on a clinical trial evaluating short-term and long term effects of transfusions on infants. The laboratory conducts structural brain imaging and cognitive testing at birth, one year, and two years of age. It is hoped that we will better be able to understand the role transfusions and anemia play in treatment of premature birth and long term outcomes of the infants.

Brain Structure and Function in Children, Adolescents, and Young Adults at Risk for Huntington Disease (Kids-HD Study)

Kids-HD was a brain imaging study at the University of Iowa from 2006-2019 that enrolled participants ages 6-25 with a family history of Huntington’s Disease (HD).  HD is a brain disease that is passed from parent to child and 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.  The purpose of this study was to look at brain structure and function in children, adolescents, and young adults that have a parent or grandparent diagnosed with HD.  The goal of Kids-HD was to find and measure the earliest signs of the disease by identifying what changes in the brain and when it changes.  Our hope is that this research will continue to help doctors and scientists develop new ways to diagnose and treat Huntington disease.  Study staff can still be reached by emailing or calling 866-514-0858.

Brain Structure and Function in Children, Adolescents, and Young Adults with Oral Clefts

Individuals born with cleft lip and/or palate have a high incidence of learning and speech difficulties. Here, at the University of Iowa researchers are trying to figure out why these difficulties occur by investigating the relationship between brain structure (e.g., volume of the orbital-frontal cortex) and brain functioning (e.g., cognition, learning and behavior). Through close examination of magnetic resonance imaging (MRI) data and neuropsychological assessment data, researchers hope to gain a better understanding about structure-function relationships so that improved interventions and outcomes for the cleft lip and/or palate population can be achieved.