Research Studies
Moral Decision-Making in Huntington’s Study
This study aims to understand social decision-making deficits in HD patients as it pertains to legal complications.
What can you expect?
Computer Tasks
Impaired decision-making is common in patients with Huntington’s disease (HD) and can result in legal problems when patients are charged with crimes or are the victims of crimes. When you participate in a computer study, you will be asked answer questions about how you would make moral and social decisions in certain situations. No computer experience is necessary to perform these tasks and rest breaks are provided frequently. As is it an observational study, no clinical intervention will be administered.
Questionnaires
You will answer questions about your mood, daily activities, sleepiness, and about your medical history. You will also answer some questions that will test your ability to do math, remember information, and solve puzzles.
Eligibility:
- Males and Females
- Have a diagnosis of Huntington’s Disease
Enrollment for this study will begin soon.
LATNS
We are studying the hypothesis that recognition and management of neuropsychiatric symptoms in HD is best achieved using a standardized, protocol driven approach.
What can you expect?
Questionnaire
If you are in this study, you will be asked to answer a series of online surveys assessing your psychiatric symptoms and quality of life in the presence of a caregiver. These surveys will be emailed to your consented caregiver in the week before your in-person visit. You will then come to clinic for an in-person assessment of psychiatric and motor symptoms of HD. You will continue to see your neurology provider for routine follow-up, and you will return for in-person follow-up assessments at 6 months, 12 months, and 18 months, repeating the online surveys prior to each visit
This study is currently enrolling for phase B.
Clinical Trials
For general questions about clinical trials research for Huntington's Disease please contact:
Elizabeth Huitz, RN
Research Nurse Specialist II
Phone: (615) 936-1007
Email: elizabeth.huitz@vumc.org
Enroll-HD
This is an observational research study that is open for recruitment for anyone with a family history of Huntington’s Disease within one generation.
What can you expect?
The study visits are conducted annually and aim to gather more information about Huntington’s Disease. Study visits may last about 1.5-2 hours and we gather health information, conduct cognitive and behavioral assessments and do a motor exam. Donating blood is also an option to help scientist who are working on better treatments. We also give time for participants to ask valuable questions to medical professionals, if this is something that is wanted. Eligible participants must be 18 or older, have tested with a positive or negative diagnosis, or be “at risk” meaning they have a parent that has Huntington’s Disease and they have opted to not be tested yet.
This study is currently enrolling.
For more detailed information on this study please contact:
Elizabeth Huitz, RN
Research Nurse Specialist II
Phone: (615) 936-1007
Email: elizabeth.huitz@vumc.org
HD Clarity
The primary objective of this study is to generate a high-quality cerebrospinal fluid (CSF) sample collection for evaluation of biomarkers and pathways that will enable the development of novel treatments for Huntington's disease (HD).
What can you expect?
Participants will attend two study visits, a Screening Visit, an Initial Sampling Visit, and may attend an optional third visit, an Optional Repeat Sampling Visit. These visits consist of blood draws, collection of vital signs, and lumbar punctures to collect CSF. To be eligible for this study, participants must be involved in the Enroll-HD study.
Enrollment for this study is active.
For more detailed information on this study please contact:
Carol Wallace
Research Nurse Specialist II
Phone: (615) 875-6426
Email: carol.l.wallace@vumc.org
Roche Generation HD-2
For more detailed information on this study please contact:
Amanda Puckett
Clinical Translational Research Coordinator III
Phone: (615) 322-2267
Email: amanda.puckett@vumc.org
KINECT-HD2
The primary objective of this study is to test the efficacy, safety, and tolerability of Valbenazine vs. Placebo for the treatment of chorea associated with Huntington's Disease.
What can you expect?
Valbenazine is already approved by the FDA for the treatment of tartative dyskinesia. Valbenazine is a daily oral pill.
Enrollment for this study is active.
For more detailed information on this study please contact:
Danielle Buchanan
Clinical Translational Research Coordinator IV
Phone: (615) 875-3274
Email: danielle.buchanan@vumc.org
UniQure
The primary objective of this study is to test the safety of AMT-130 in adults with early manifest Huntington's Disease.
What can you expect?
AMT-130 is an investigational, neurosurgical single administration gene therapy intended to modify the disease course for HD. This 5-year trial consists of a blinded 18-month core study period to evaluate the safety and potential impact of AMT-130 on disease progression and an unblinded 3.5-year long-term period with annual follow-up visits to evaluate the safety of AMT-130 and disease progression.
Enrollment for this study will start soon.
For more detailed information on this study please contact:
Danielle Buchanan
Clinical Translational Research Coordinator IV
Phone: (615) 875-3274
Email: danielle.buchanan@vumc.org
Proof-HD
The primary objective of this study is to test the safety of pridopidine in patients with early stage Huntington's Disease.
What can you expect?
The study will consist of a screening period, a double-blind study treatment period (Main study), and an open-label extension (OLE). In the Main study, participants will be randomized to take either 45 mg of pridopidine or placebo (inactive substance), at a schedule of 1 capsule daily during the first 2 weeks and then 1 capsule in the morning and 1 capsule in the afternoon about 7 to 10 hours apart for a total daily dose of 90 mg or placebo for the remaining weeks in the study.
Enrollment for this study is currently closed.
For more detailed information on this study please contact:
Danielle Buchanan
Clinical Translational Research Coordinator IV
Phone: (615) 875-3274
Email: danielle.buchanan@vumc.org
Pivot-HD
The primary objective of this study is to test the safety of PCT-518 and placebo in patients with Huntington's Disease.
What can you expect?
This is a Phase 2a randomized, placebo-controlled, dose-ranging study to evaluate the safety
and efficacy of PTC518. A Data and Safety Monitoring Board (DSMB) will closely monitor
the safety of subjects.
Subjects will return to the clinic every 28 days until Visit 5 (Day 85). There will be a
Follow-Up Safety Visit (Visit 6) via telephone/telehealth to collect adverse event data.
Enrollment for this study is currently paused in the United States.
For more detailed information on this study please contact:
Danielle Buchanan
Clinical Translational Research Coordinator IV
Phone: (615) 875-3274
Email: danielle.buchanan@vumc.org