In the endeavor to understand and treat Huntington's 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's 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's disease in order to later judge the effectiveness of a particular drug or treatment. Observational Huntington's 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's disease.
The following observational studies are currently enrolling participants or otherwise active:
Frequency of Selected Single Nucleotide Polymorphisms (SNP) in Phase with the Mutant & Wild-Type HTT Alleles in Huntington's Disease Gene Expansion Carriers
The purpose of this study is to investigate what types of genetic differences (called single nucleotide polymorphisms or SNPs) are present in the abnormal Huntingtin gene AND if these genetic differences are more common in some parts of the world. The study aims to expand our understanding of Huntington's disease (HD) as well as the geographic locations of individuals with SNPS on the abnormal huntingtin gene.
This study will also help physicians determine your potential eligibility for future Roche interventional HD studies targeting specific SNPs on the abnormal huntingtin gene. (Should you be eligible for future Roche studies and agree to participate, a separate Informed Consent Form will be necessary.)
This study involves data collection regarding your demographics (i.e., sex, age, race, ethnicity) as well as your medical and medication (including over the counter and relevant supplements) history. Information regarding your medical condition will include your HD family history, information about your disease, movements, behaviors, daily functioning, and cognition. Information is obtained through questionnaires. A blood sample specifically designed for phasing SNPs on the wtHTT and mHTT alleles will also be drawn. The total time for study participation is one day.
If you are interested in more information or participating in this study, please contact Harika Anedal Kekinagath, RN, MSN at (319) 356-8865 or harika-anedalkekinagath@uiowa.edu.
Auto-HD
This study examines both the functional and structure of the brain. It’s overarching goal is to determine if certain parts of the brain work or appear differently in individuals with Huntington’s disease. More specifically, it examines the network of brain regions which control the autonomic nervous system. Participants in this study undergo MRI imaging. You may be eligible if you meet the following criteria: 1) 6 to 30 years of age; 2) Have a parent or grandparent diagnosed with HD; 3) are currently enrolled in the Change-HD study. If you are interested in more information, please reach out to Trevor Viohal at trevor-viohal@uiowa.edu.
Wear HD
This study aims to demonstrate the feasibility of wearable devices to track changes in related to Huntington’s disease progression. The study tests wearable devices in individuals in the early stages of the disease. Data collected includes hart rate and heart rate variability over a period of six months. This information is then compared to data obtained through an MRI. You may be eligible if you meet the following criteria: 1) have a genetically confirmed diagnosis of Huntington’s disease OR a clinical motor diagnosis of Huntington’s disease within the past two years; 2) willingness to wear a wrist heart rate monitor for at least 10 hours a day for four days a week; 3) a smartphone which can operate the Fitbit app (IOS 12 or later, and Android 6.0 or later); 4) are not pregnant or breastfeeding; 5) no other neurologic history aside from Huntington’s disease; and 6) able to complete an MRI scan for 60 minutes (i.e., able to lie on back, no metal/magnets in head with limited exceptions). Other major medical conditions may disqualify study participation. If you are interested in participating, please contact Trevor Viohal at trevor-viohal@uiowa.edu.
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 Health Care Medical Center. 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
Enroll-HD is a worldwide study for Huntington's disease family members, collecting data in an effort to improve understanding and treatment of Huntington's disease. The study aims to provide clinical data and biologic samples to help better understand the human biology of Huntington's disease, as well as determine what interventions work to improve the care of people with Huntington's disease and to promote the recruitment of clinical trial participants. Any member of a family affected by Huntington's disease can participate, including: those who have tested positive or negative for the Huntington's disease gene mutation; those who are at risk but have not undergone genetic testing; and spouses/partners of those with Huntington's 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.
Kids-JHD
The Kids-JHD study is a brain imaging study run by researchers in the Department of Psychiatry at the University of Iowa Health Care Medical Center. 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
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:
Generation HD2
The Generation HD2 in a Phase 2, placebo-controlled, double-blinded study which evaluates the effect of Tominersen to reduce the production of all forms of the Huntington protein (HTT), including mHTT, the possible cause of Huntington’s disease. Eligibility criteria are: 1) a formal diagnosis of early manifest HD or who carry the abnormal Huntington gene and are in the very early stages of the disease with subtle signs (which may only be apparent during a detailed examination by a physician); 2) age between 25 and 50 years. Participation involves a minimum of five injections via a lumbar puncture as well as clinic visits. The clinic visits take place approximately one every four months. If you are interested, please contact Harika Anedal Kekinagath, RN, MSN at (319) 356-8865 or harika-anedalkekinagath@uiowa.edu.
Purview Study
The PURVIEW Study is an open-label study, which means all participants will be receiving SAGE-718. There is no placebo group. The study lasts up to 14 months and includes up to nine visits to the study office. Eligibility criteria are: 1) between the ages of 18 and 65 years; and 2) without symptoms of Juvenile Huntington's Disease. If you are interested, please contact Harika Anedal Kekinagath, RN, MSN at (319) 356-8865 or harika-anedalkekinagath@uiowa.edu.