Living With HD
Join Us for the Third Annual Clinical Research Initiative Day
Have you ever wanted to participate in a clinical research trial or observational study but none were offered in your area or something prevented you from traveling to the research site?
Well now is your chance to be part of a research study that will be conducted on Sunday, June 22 immediately following the HDSA Annual Convention. HDSA has invited researchers from around the US to be part of the second Annual Clinical Research Initiative Day.
To participate, read the study description below to determine if you fit the general criteria for participation.
If yes, then either 1: contact the study investigator to pre-register now OR 2: go to the HDSA Exhibit Hall on Thursday, Friday and Saturday (June 19, 20 and 21) to talk with the investigator and schedule a private and confidential appointment on Sunday, June 22. The investigator will answer any questions you may have and ensure you are a good fit for the study. You will be asked to sign an HDSA release as well as a release for the study.
We hope you will take advantage of our third Annual Clinical Research Initiative Day and help to make it a huge success!
The following are studies that will be conducted on SUNDAY, JUNE 22:
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 HDSA National Convention as a sub-study of PREDICT-HD.
Criteria for eligibility: Individuals who have tested positive for the Huntington disease gene expansion, as well as those who have been clinically diagnosed with HD are eligible to participate. You do not need to currently be enrolled in PREDICT-HD to participate.
Contact: Courtney Shadrick, 319-353-5443, firstname.lastname@example.org.