Enroll-HD: A Prospective Registry Study in a Global Huntington’s Disease Cohort
Neal Hermanowicz, MD
The purpose of this research study is to collect clinical information about the health of subjects with Huntington’s disease. In addition the researchers will collect biological samples, such as blood and DNA. Information and samples will be used to learn more about HD and to try to find new treatments for the disease.
We are asking you to participate in this study because you are affected by HD or you have an HD family. This study will help researchers learn more about HD and it is hoped that this information will help in the treatment of future patients with HD.
You can participate in this study if you:
- Are able to provide written consent to participate in the study.
- You meet one of the two categories below:
- Carrier: You carry the HD gene mutation.
- Control: You do not carry the HD genetic mutation.
These categories are subdivided into six subgroups:
- Manifest/Motor-manifest HD: An individual with clinically diagnosed features of HD.
- Pre-Manifest/-Motor-manifest HD: An individual without clinically diagnosed features
- Genotype Unknown: A relative (first or second degree) to an HD carrier, who has
not been tested for HD and therefore has an undetermined carrier status.
- Genotype Negative: A relative (first or second degree) to an HD carrier, who has
been tested for HD and is known to not carry the HD gene mutation.
- Family Control: A spouse, caregiver, or family member, of an individual who is a
carrier of the HD gene.
You cannot participate in this study if you:
- You do not meet the above inclusion criterion
- You have a movement disorder not related to HD (i.e. Parkinson’s disease, etc.)
There is a baseline visit which will take 60-75 minutes, then annual visits every 12 months which will take approximately 45 minutes. Enroll-HD is an open-ended, prospective study, which means this study does not have a future end date. You will be asked to participate in as many annual study visits as possible. It is an ongoing longitudinal study. That means we will ask you to undergo the research procedures about once a year for as long as you are willing to participate.
You will not directly benefit from participation in this study.
There is no compensation for this study. However, you are eligible to receive payment to defray the cost of travel. The payments are based on how far you need to travel from your home to UC Irvine.