NYA Research Committee

The Research Committee is lead by the Research Chair. The focus of the Research Committee is to work to increase awareness of research opportunities for persons aged 9-29, to include but not limited to Observational Trials, Clinical Trials, and Longitudinal Studies which have been approved by HDSA. Will work with other committees to share awareness of these opportunities for our members.

Join Us!

We are currently looking for members who are interested in dedicating their efforts to our NYA Research Committee.

Research Opportunities

Sanguine BioSciences

Sanguine is searching for participants for a one-time blood donation to identify and explore biomarkers to develop new treatments and diagnostics. This is a pre-clinical research study and all participants will be reimbursed $50 for their time and an additional $25 will be donated to HDSA. Participants can donate blood from the comfort of their own home.

Eligibility: Age of 18 and has been diagnosed with Huntington's disease and currently symptomatic.

Visit the Sanguine site for more info.


The Kids-HD study is a brain imaging study run by researchers in the Department of Psychiatry at the University of Iowa Hospitals and Clinics. The research focuses on children ages 6-18 years of age who have a parent or a grandparent who has Huntington Disease (HD) and are thus at risk for developing HD themselves. 

The primary research interest of the Kids-HD project is to evaluate the effects of the CAG repeat in the Huntingtin gene (HTT) on the developing human brain.  Although HD is a disease that typically manifests in adulthood, many lines of research have supported the notion that there is an important component of altered brain development to the disease etiology. Evidence of 
functional abnormalities in pre-manifest HD (pre-HD) have shown that pre-HD subjects exhibit abnormalities in brain structure, 
cognition, behavior and motor function long before (up to 20 years) a clinical diagnosis is given. Some researchers suggest that 
these changes are due to early degeneration.  However, an alternate explanation is that these subtle changes are a result of 
abnormal brain development and are present throughout life because the HD mutation is present from conception and could 
impact normal, early developmental processes.

The Kids-HD study is designed to evaluate brain structure (using Magnetic Brain Resonance Imaging or MRI) and brain function 
(cognitive, behavioral, and motor skills) in children at risk for HD. For research purposes only, the participants provide DNA 
(through either blood or saliva) and the CAG repeats in the HD gene are quantified. This data is used for research purposes only.  
The results are not revealed to parents, participant, or any member of the research team. The determination of CAG repeats 
allows them to compare those children who are gene non-expanded or GNE (< 39 CAG repeats) to those who are gene-
expanded or GE (> 40 CAG repeats).  An additional comparison group is healthy children (HC) with no family history of HD.

Eligibility: Children, teenagers, and young adults who are between 6 and 18 years old and are at risk for HD are eligible to participate in this study. “At Risk” means someone who has a parent or grandparent who has HD.

Click here for the Kids-HD website.


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. The research focuses on young people who are diagnosed with Juvenile Huntington Disease (JHD).  This is a separate sister study to the Kids-HD study that has been designed to better address the additional needs and research questions that arise due to juvenile onset. 

The primary research interest of the Kids-JHD project is to evaluate the effects of the CAG repeat in the Huntingtin gene (HTT) on the developing human brain.  Although HD is a disease that typically manifests in adulthood, juvenile onset can occur in rare cases.  This study will try to identify and measure common symptoms and developmental patterns that might be happening in JHD, specifically the impact of higher CAG repeat expansion on early developmental processes as opposed to early degeneration. 

Click here for the Kidh-JHD website

Enroll HD

Enroll-HD is a new international observational trial that will accelerate the development of therapies for HD by:

  • Compiling uniform clinical data and biological samples critical to better understanding the natural history of HD
  • Building an even more comprehensive database of HD information — including biologic samples — that will be available for use by any HD investigator worldwide,
  • Making available larger datasets from a greater number of research participants, thereby enhancing the power of data-mining and computational b iology projects,
  • Serving as a platform to facilitate clinical sub-studies and the development and validation of novel assessment tools for HD
  • Expediting recruitment into global clinical trials of candidate therapeutics in the coming years.

It will build upon the COHORT (US/Canada) and REGISTRY (Europe) studies, and include parts of South America, Asia, Australia and other areas in the future. 

Eligibility: Everyone in the HD Community

Click here for the Enroll HD website

HDO Life

Validation of the Huntington Disease Related Quality of Life Measure 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 will be able to use the measure in clinical trials to see if quality of life improves as a result of treatment. Study visits are being conducted at the University of Michigan as well as University of Iowa, Indiana University, Johns Hopkins University, Rutgers University, 
UCLA, and Washington University in St. Louis.
Eligibility: Individuals who have tested positive for the Huntington disease gene expansion and/or have been clinically diagnosed with HD are eligible to participate. Participants must be 18 yrs or older and be able to read and speak English.

Contact: HDQLIFE Study Team at (734) 764-0644 or email PMR-HDStudy@med.umich.edu

Contact: HDQLIFE Study Team at (734) 764-0644 or email PMR-HDStudy@med.umich.edu

Predict HD

PREDICT-HD is a study of healthy persons who are known to have the CAG expansion in the HD gene. The PREDICT-HD study 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 HD. The intent of the study is 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 HD.

PREDICT-HD is studying people at risk to determine:
  • The earliest signs of HD are and when they begin.
  • The most accurate tests are that clinicians can use in detecting the onset of HD. 
  • Factors which influence the age at which a person carrying the HD gene becomes symtomatic.
Eligibility: Individiduals who are gene positive and pre-symptomatic.

For eligibility guidelines and other information about the trial click here | For a list of participating sites and contact people click here: Huntington Study Group