Huntington’s Disease Research Trials


BIDMC is a site for various clinical studies related to Huntington's disease, providing our patients with access to research trials with varying levels of involvement. Read below for a list of trials with open enrollment. Contact Noah Allanoff at 617-667-2355 with questions.


KINECT-HD

The Huntington Study Group is now recruiting for KINECT-HD, a Phase III trial designed to test valbenazine as a treatment for chorea, one of the more common symptoms of HD characterized by involuntary jerking or writhing movements. Valbenazine is already an FDA-approved medication for its use in the treatment of a condition known as tardive dyskinesia, but researchers believe that valbenazine could also play a beneficial role in the treatment of chorea associated with HD.

This clinical trial will be enrolling participants at BIDMC in the coming months. Please contact Jackie Fung at or Noah Allanoff with questions.


Enroll-HD

Enroll-HD is a worldwide observational study for families affected by Huntington’s disease. This is an open-ended study, meaning that it is not set to end at any defined time, and participants can choose to leave the study at any time. The purpose of Enroll-HD is to understand why and when certain HD symptoms appear, as well as identify possible ways to develop new, effective drug treatment options.

Enroll-HD is not a clinical trial, so it does not test potential therapies. However, there are many reasons to participate in Enroll-HD, including:

  • You will be part of a worldwide effort to find effective treatments for HD
  • You will have the attention and support of the Enroll-HD team
  • You will be able to find out more about HD and the potential of new treatment options, or clinical trials you might not have had access to otherwise
  • You’ll see that you are not alone in this journey

Visit Enroll-HD’s website to learn more.


HD Imaging Study

In partnership with Harvard University’s Center for Brain Science, we have launched a new study to investigate changes in brain networks in individuals with HD prior to the onset of motor symptoms. We are currently recruiting individuals who have genetically-confirmed HD, but who are not symptomatic.

As part of the study, we will use functional magnetic resonance imaging (fMRI) to look at changes in blood flow to areas of the brain and to visualize brain networks. This includes a two-hour visit to the Center for Brain Science (52 Oxford Street, Cambridge, MA), for paperwork and imaging. Participants will be compensated $100 for the visit and reimbursed for transportation (e.g. taxi, Uber, etc.) or parking, up to $200. Please contact Jing Xie for more information.


GENERATION-HD1

Enrollment for this study is closed. We will report findings as soon as they are available.

GENERATION-HD1 is an interventional clinical trial sponsored by Roche that tests a novel treatment for HD. The drug under investigation in this trial is called an antisense oligonucleotide (ASO) and it is injected directly into the intrathecal space of the spinal cord with hopes that it will be able to reach the regions of the brain that are most affected by HD. Please contact Noah Allanoff for more information.