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:


  1. 1.       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,

  1. 2.       Study Title: An Updated Survey of Attitudes, Beliefs and Concerns Regarding Predictive Testing for Huntington’s disease

Study description: This study is a survey that will be offered as part of Clinical Research Initiative Day. The study is for individuals age 16 and older at risk for Huntington’s disease who are considering or have already undergone predictive testing. The study aims to provide a contemporary look at individuals’ attitudes, beliefs and concerns regarding predictive testing with a specific emphasis on anonymous testing. Participants will be offered the choice of a paper or web-based version of the survey at the following link:

  1. 3.       Study Title: The Changing Demographics of Individuals Seeking Presymptomatic Testing for Huntington Disease

Study Description: This study aims to better understand individuals who consider whether or not to pursue presymptomatic testing for HD. Participation involves completing a brief survey. Information collected may improve genetic services in the future. This study is open to anyone 18+ years old, who is at risk for HD or has already had presymptomatic genetic testing. We will be in the Exhibitor’s Hall during the HDSA Convention and at Clinical Research Initiative Day (CRID). For more information or to schedule a time during CRID, please contact Ginger Norris at or 804-662-5300.


Other Studies Providing Information Only in the HDSA Exhibit Hall:

Name of Study: PRE-CELL: A Pre-Cellular Therapy Observational Study in Early Huntington’s Disease

Study description: This observational study will establish a clinical baseline and measure changes over time in movement, thinking, behavior, brain imaging, blood and spinal fluid markers in participants with early stage Huntington’s disease. Participants enrolled in this study may be eligible to participate in a future planned study of stem cell therapy for Huntington’s disease.

For information contact Teresa Tempkin, RNS, MSN at 916-734-6278 ( or Amanda Martin, BA at 916-734-3541 (