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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:

HD Registry

You are being invited to participate in a registry (list) of people interested in Huntington’s disease (HD) research. It may be that you have a family member or other loved one with HD, or that you may have or are at-risk for HD. If you agree to participate in the registry, your name will be added to a list of people who will be invited to participate in future research studies on Huntington’s disease. 

Signing up for the registry allows the HD research team the opportunity to contact individuals on the list who may fit a study’s eligibility requirements. In addition to signing up for the registry, there are some questions we would like you to answer. Answering these questions helps us determine your eligibility for our research studies. None of the information you provide us will be used to provide you with clinical care.We will not be creating any medical record or adding any information to an existing    medical record for you at the University of Iowa Hospitals and Clinics. Rather, as part of your participation in this registry, the information you provide us is used only to check for your eligibility to participate in our research. There is no obligation to take part in any future research, and you may request to have your name removed from this contact list at any time. Other members of your family are invited to participate in this registry as well.

By participating in this registry, you will also receive information on local support groups and newsletters letting you know what is happening in HD research. This list of names will only be used for Huntington’s disease research and communication. With this registry, we hope to increase the understanding of this disease and discover ways of treating it. You can also contact Jordan Schultz, PharmD at (319) 384-9388 or jordan-schultz@uiowa.edu


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 Julie Koeppel at (319) 335-1611 or julie-koeppel@uiowa.edu


The Kids-JHD 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 young people who are diagnosed with Juvenile Huntington Disease (JHD). This study will try to identify and measure common symptoms and developmental patterns that might be happening in JHD. Young people ages 4 to 30 years old are eligible to participate in this study if they have a diagnosis of JHD. For more information, call 1-866-514-0858.


ChANGE-HD expands upon the Kids-HD study run by Peg Nopoulos, MD, and her research team. The study looks to explain how the gene responsible for Huntington's Disease (HD) affects brain development, and we hope to find a way to identify the best time for gene therapy during development. Young people between the ages of 6 and 30 and who have a parent or grandparent with HD can participate in this study. For more information, call 1-866-514-0858 or email change-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: 

Dimension Study

The Dimension Study is a Phase 2, placebo-controlled, double-blinded study which evaluates the effect of SAGE-178 on cognitive function in participants with Huntington's Disease. Eligibility criteria are: 1) between the ages of 18 and 65 years; and 2) without symptoms of Juvenile Huntington's Disease. Recruitment is ongoing. If you are interested, please contact Harika Anedal Kekinagath, RN, MSN at (319) 356-8865 or harika-anedalkekinagath@uiowa.edu