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Below is a list of current projects and trials enrolling subjects at the University of Iowa Hospitals and Clinics. Please note: There is no cost to the subject for participating in the research studies.
The registry includes people interested in HD research. It may be that you have a family member at risk or other loved one with HD or you may be at risk. If you agree to become a part of the registry, this allows us to add your information to our database and invite you to participate in future research studies. PREDICT-HD Neurobiological Predictors of Huntington’s Disease Onset This trial will help to define the earliest changes in HD. This information will help researchers judge the effectiveness of future treatments more accurately. Individuals who have been genetically tested and are pre-symptomatic are encouraged to enroll. Participants will be evaluated once a year for seven years. Evaluation will include neuropsychological testing and MRI scans. Compensation is available for study participants. Study Controls Individuals who have tested negative for the HD gene expansion may participate in many of the protocols list. Please contact the HD Center if you have tested negative and are willing to volunteer as a control participant for various studies. Inclusion of control participants is critical because it allows us to understand the earliest changes in HD. Without controls as a comparison group, we do not understand when subtle changes begin to occur in brain functions. By serving as a control participant, you provide us with information about typical brain functioning. HD MAPS STUDY HD MAPS (HD Modifiers in Age at onset in Pairs of Siblings) is investigating genetic factors that influence the age that people develop HD and the severity of the illness. As part of the HD MAPS study, coordinators are seeking siblings that are affected by HD. The study requires affected brothers and sisters to each contribute a blood sample. Samples are encoded to ensure privacy. As of December 2002, nearly 1000 sibling pairs from a variety of sites around North America have been registered. HD MAPS is still recruiting more sibling pairs. If you and one or more of your siblings are diagnosed with HD and are interested in participating in this study, please contact Anne Leserman (phone number and email below). General HD Protocol Participants will undergo motor, psychiatric, cognitive, and behavioral assessments. Individuals at-risk for or diagnosed with HD are continually being recruited. Participation takes approximately two hours and we encourage participants to come in once a year for follow-up testing. fMRI In this study, functional Magnetic Resonance Imaging (fMRI) scanning will be used to examine brain changes in HD during cognitive tasks. Participants currently enrolled in the PREDICT-HD study are being invited to participate in an fMRI study at either the University of Iowa or the Cleveland Clinic in Cleveland, Ohio. Participants will undergo fMRI scanning for three visits with 12 months between each visit. This 5-6 hour study takes place over the course of two days. Compensation is available. |
MRIThe purpose of this study is to investigate brain structure in HD. Participants will receive a Magnetic Resonance Imaging (MRI) scan, which will allow us to measure the volumes of different brain regions. This will provide useful information about the disease process in HD. Individuals who are gene positive for HD are eligible to participate. The study will take approximately 1-3 hours to complete. Compensation is available. COHORT Cooperative Huntington Observational Research Trial (COHORT) is a multi-site, long term observational study. Our goal is to increase our knowledge about HD (such as potential treatments, planning future experimental drug studies and work toward postponing the onset of or slowing the progression of HD). The study is open to both adults and children who have clinically diagnosed HD and to adults that are part of an HD family. Participation in COHORT is voluntary, and visits occur annually. At the initial visit a blood sample will be drawn for HD genetic testing and possible biomarkers. Medical and neurological evaluations are performed at each yearly visit; these include standardized assessments of movement, thinking, memory, ability to perform everyday tasks and behavior. CIT-HD CIT-HD is a clinical trial for individuals who are not currently taking anti-depressant medication, who notice mild changes in their thinking abilities, and who are diagnosed with HD. The trial evaluates citalopram (or Celexa) effects on HD symptoms. Citalopram is currently approved currently by the FDA for the treatment of depression. This is a double blind placebo-controlled study, meaning not everyone will take citalopram during the study. Participation lasts for 17 weeks and compensation is provided. The University of Iowa is the only HD Center of Excellence conducting this study. RESPOND-HD The RESPOND HD survey was launched in 2007. The purpose of RESPOND-HD is to better understand experiences and perceptions of discrimination among persons who have a family history of HD or who have undergone pre-symptomatic testing for HD. The study is being led by Dr. Jane Paulsen, principal investigator. Participation in this study involves completing the RESPOND-HD Survey and study subscales. Compensation will be available. This study is designed for those individuals who are at risk for HD (tested and non-tested) but who do not have symptoms of HD. FAMILY STUDY The Family Health project continues to recruit teen volunteers to complete a survey being conducted by Dr. Janet Williams at the University of Iowa. Family members (ages 14-18) will be invited to complete one mailed survey that describes health and caregiving concerns for themselves and the person with HD. Dr. Williams and her colleagues hope to better understand what health related issues family members manage from the time of receipt of predictive HD test results through the time of caregiving for the person with HD in the home, and in the nursing home or long term care facility. Teenage family members (ages 14-18) are eligible to participate PERFORM-HD Psychosocial Elements Relating to Functional, Occupational and Relationship Modifications in Huntington’s Disease This study aims to assess psychosocial functioning and quality of life in pre-symptomatic HD. A set of survey measures asks questions about areas such as daily work functioning and productivity, aspects of interpersonal relationships (partner, friends, family) and overall quality of life. Study data will be paired with findings from yearly PREDICT-HD visits to help better characterize the subtle changes in functioning experienced by those with HD. 2CARE 2CARE is a clinical trial for individuals diagnosed with HD. The trial evaluates Coenzyme Q-10 (or CoQ-10) on HD symptoms. This is a double blind placebo-controlled study, meaning not everyone will take CoQ-10 during the study. Participation lasts for 5 years. The University of Iowa is one of approximately 43 research centers conducting this study Eye Tracking: Establishing a Biomarker for Huntington’s Disease Eye Tracking is a study designed to utilize advanced eye-tracking methods to establish a biomarker for HD by investigating subtle motor and cognitive eye tracking problems in individuals tested for HD. Participants 18 years of age or older who have completed an HD gene test are invited to participate in this 45 minute eye tracking session. JHD Registry/Natural History Study In collaboration with the JHD working group and the European Huntington’s Disease Network (EHDN), the University of Iowa is assisting in obtaining data and vital information from JHD families in an effort to modify rating scales which are designed to be more suitable for monitoring disease progression in those with JHD. During the evaluation period these new and modified scales will be used alongside the existing scales of the Unified Huntington’s Disease Rating Scale (UHDRS ’99). JHD Qualitative Study In collaboration with the JHD working group and the EHDN, the University of Iowa is assisting in obtaining data from JHD parents in the US. This project follows on from a qualitative study carried out in the U.K. into the impact of JHD on the parent/guardian; identifying the needs of individuals and families affected by JHD. For more information about the University of Iowa’s Huntington’s Disease Center of Excellence clinical and/or research opportunities please contact Anne Leserman phone: (319) 353-4307, email: anne-leserman@uiowa.edu. |
