Study Title: Validation of the Huntington Disease Related Quality of Life Measure (HDQLIFE)

Study description: 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.

 

Criteria for 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 PMR-HDStudy@med.umich.edu