Huntington's Disease Society of America Center of Excellence

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

    In the endeavor 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 or otherwise active:

    Enroll-HD

    EnrollHD Enroll-HD is a worldwide study for Huntington disease family members, collecting data in an effort to improve understanding and treatment of Huntington disease. The study aims to provide clinical data and biologic samples to help better understand the human biology of Huntington disease, as well as determine what interventions work to improve the care of people with Huntington disease and to promote the recruitment of clinical trial participants. Any member of a family affected by Huntington disease can participate, including: those who have tested positive or negative for the Huntington disease gene mutation; those who are at risk but have not undergone genetic testing; and spouses/partners of those with Huntington disease. Participants will undergo a series of tests at an annual visit. For more information, contact Jolene Luther at 319-384-1008 or jolene-luther@uiowa.edu.

    PREDICT-HD

    PREDICTHD 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 negative for the Huntington disease gene mutation may participate in this study. Participants will undergo testing, answer questionnaires and provide biological samples (including cerebral spinal fluid through a spinal tap procedure) at the visit. For more information, contact Bella De Soriano at 319-353-4212 or isabella-desoriano@uiowa.edu.


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

    HDQLIFEHDQLIFE 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. This study is closed to new enrollment as follow-up visits continue. For more information, contact Courtney Shadrick at 319-353-5443 or courtney-shadrick@uiowa.edu.

    Kids-HD


    KidsHDKids-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 Sonia Slevinski (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 trials are active:

    CREST-E

    CREST-E is currently enrolling. 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.

    First-HD

    (not currently enrolling)

    PREQUEL

    (not currently enrolling)

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