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Join Us for the Second Annual Clinical Research Initiative Day
Well now is your chance to be part of a research study that will be conducted on Sunday, June 23 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 20, 21 and 22) to talk with the investigator and schedule a private and confidential appointment on Sunday, June 23. 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 second Annual Clinical Research Initiative Day and help to make it a huge success!
The following are the studies that will be conducted on SUNDAY, JUNE 23:
Validation of the Huntington Disease Related Quality of Life Measure (HDQLIFE)
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 but have not 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.
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. Our research is about how Huntington Disease might affect brain development. We use cognitive, neurological, and behavioral testing along with Magnetic Resonance Imaging (MRI) to study how a person’s brain works and grows.
Eligible participants are children, teenagers, and young adults who are between 6 and 18 years old and at risk for Huntington Disease (HD). “At Risk” means someone who has a parent or grandparent with a diagnosis of HD. Kids who are at risk may or may not have the CAG repeat expansion themselves. Children, teenagers, and young adults who are having symptoms or who have been diagnosed with Juvenile Huntington Disease may be eligible to participate in our Kids-JHD protocol.
WHO TO CONTACT: email@example.com, 866-514-0858
NOTE: Kids-HD will be at the 28th Annual HDSA Convention and Clinical Research Initiative Day for informational purposes and to recruit participants. No actual part of the study will be conducted in Jacksonville.
Psychological Effects of Presymptomatic Testing in Huntington Disease and Their Effects on Familial and Romantic Relationships
Brief Description of the Study: The goal is to determine what impact the psychological effects of presymptomatic predictive testing in HD have on romantic and familial relationships. Ultimately, the investigators hope to be able to predict how to best help people who decide to undergo any type of predictive testing preserve and maintain their familial and romantic relationships.
Criteria for Eligibility: Anyone who has had presymptomatic predictive testing for the Huntington Disease mutation regardless of their result. There are no other demographic criteria, all ages and ethnicities are welcome.
Evaluation of Online Block 2005 Food Frequency Questionnaire Among Persons With and Without Huntington’s Disease
Brief Description of Study:
The multidisciplinary team of physicians at the Huntington’s disease Program at Virginia Commonwealth University is currently conducting a study to determine individuals’ opinions of an online food questionnaire. Information collected will also be used to determine of the food questionnaire provides useful information about food intake.
Interested individuals can contact: Ginger Norris at firstname.lastname@example.org or by calling 804-828-3474 to schedule a time to complete the questionnaire in person on June 23, or they can stop by our booth in the Exhibit Hall to pick up information to take the questionnaire at a later date.