Huntington's Disease Society of America Center of Excellence

  • Nopoulos working on computer with assistantbrainPaulsen working with a patient
  • Research

    In the fight to understand and treat Huntington disease, scientists use many different types of research. By volunteering to be part of research, you play a vital role in advancing scientific understanding.

    Several Huntington disease studies are currently in progress and we always welcome new participants.

    Observational Studies

    Observational studies are an important precursor to clinical trials and provide us with useful clinical information about disease progression and potential modifying factors (factors that can modify the course or severity of an illness). These studies document the symptoms and natural progression of Huntington disease in order to later judge the effectiveness of a particular drug or treatment. Observational Huntington disease studies are also important to gain a better understanding of the disease as a whole, and to determine the most accurate tests a clinician can use in detecting the onset of Huntington disease.

    The following observational studies are currently enrolling participants:

    PREDICT-HD

    PREDICT-HD uses a variety of tests to examine the nature and pattern of neurobiological changes and neurobehavioral changes that occur in the period leading up to a diagnosis of Huntington disease. The study also seeks to learn more about the beginning changes in thinking skills, emotional regulation, brain structure, and brain function as a person begins the transition from health to Huntington disease. Individuals 18 years of age or older at risk for Huntington disease who have tested positive for the Huntington disease gene mutation, and who have not been diagnosed with symptoms of Huntington disease may participate in this study. For more information, contact Stephen Cross at 319-384-1008 or stephen-cross@uiowa.edu.

    Validation of the Huntington Disease Quality of Life Measure (HDQLIFE)

    HDQLIFE is an observational study that uses a variety of tests and questionnaires to measure participants’ quality of life related to their social, mental, physical and cognitive health. Researchers hope to develop a new measure to evaluate quality of life for those affected by Huntington disease. Once the measure has been refined and validated by this study, researchers could use the measure in future clinical trials to see if quality of life improves as a result of treatment. Individuals who have tested positive for the Huntington disease gene expansion are eligible to participate. Those in PREDICT-HD can participate with very little additional testing. For more information, contact Courtney Shadrick at 319-353-5443 or courtney-shadrick@uiowa.edu.

    Juvenile Huntington Disease Natural History Study

    Juvenile Huntington Disease Natural History Study examines the effectiveness of clinical measurements related to Huntington disease in individuals who have shown features of the disease before the age of 20. The study will compare the current adult version of the Unified Huntington’s Disease Rating Scale to a new modified version specifically developed for the juvenile population. The purpose of this research study is to better understand the disease and to improve the currently available tools to follow the course of the disease in this younger age group. Individuals who have shown features of juvenile Huntington disease before the age of 20 may participate in this study. For more information, contact Amanda Miller at 319-335-6640 or amanda-c-miller@uiowa.edu.

    Kids-HD

    Kids-HD is a brain imaging study run by Peg Nopoulos, MD, and her research team. The study looks at brain structure and brain function in kids from Huntington disease families to determine how the brain develops in those at-risk for Huntington disease from childhood through the course of their lives. Kids between the ages of 6 and 18 who have a parent or grandparent with Huntington disease may participate in this study. For more information, please contact Joy Goins at 319-467-5519 (toll-free: 866-514-0858) or kids-hd@uiowa.edu.

    Clinical Trials

    Clinical trials are typically studies in which participants are assigned a treatment (or placebo in double-blind trials), and their outcomes are measured, in order to find treatments that work in people. The following clinical trial is currently enrolling participants:

    CREST-E

    For more information on CREST-E, contact Jacky Walker at 319-353-4537 or jacky-walker@uiowa.edu. View the current observational studies and clinical trials in your area with an interactive map from the Huntington's Disease Society of America.

    Other Huntington Disease Research at the University of Iowa

    Beverly Davidson, PhD, studies inherited genetic diseases like Huntington disease, and focuses inpart on RNA interference (RNAi), a method for inhibiting target gene expression and a unique tool for Huntington disease therapy by attacking the fundamental problem directly. Researchers in the Davidson Laboratory are also examining how naturally occurring noncoding RNAs (microRNAs) participate in cell fate decisions in normal development, and how their expression is altered in disease states. For more information, visit the Davidson Laboratory website.

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