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Why bother to participate in clinical trials and observational studies? Because, without participation we will never have new treatments for Huntington's.

Clinical Trials

GENERATION-HD1

(pre-screening only) Enrolling date pending

Sponsor: Roche Pharmaceuticals
This clinical trial will be testing the Ionis/Roche/Genetec antisense oligonucleotide (ASO) to study whether this drug will slow the progression of HD.

660 participants will be enrolled at 80-90 centers worldwide. Criteria include:
  • Age: 25-65
  • “CAP” score 400 or more; CAP score = (length of CAG repeat–33.66) x age at start of the study
  • Fairly independent function
  • Thought able to complete the 2-year trial and able to commit to full day clinic visits
  • Able to undergo MRI scans

Study Description: Drug (and placebo) will be given into spinal fluid: All participants will have spinal fluid injections every 2 months with. 1/3 of participants to receive placebo, 1/3 to receive the drug every 2 months, 1/3 to receive drug every 4 months (at 2 months this group will receive placebo).

Booth Gardner Parkinson’s Care Center (Evergreen Neuroscience Center) 
Dr. Pinky Agarwal,
Primary Investigator

Anna Fierro,
Research Coordinator
12039 128th St., Suite 300,
Kirkland, WA 98034
Phone: 425.899.5387
Fax: 425.899.3147
Email: amfierro@evergreenhealthcare.org
 
SIGNAL

(ongoing/
recruitment completed)

Sponsor: Vaccinex Inc
This clinical trial is testing the safety of the VACCINEX developed Antibody (Pepinemab) in HD. Though not the primary goal, any changes in MRI scans and measures of disease progression will be assessed.

Though no longer enrolling, this trial is being conducted at:

University of Washington Department of Neurology 
Dr. Ali Samii,
Primary Investigator

Debra Del Castillo,
Research Coordinator

Phone: 206.543.3647
Fax: 206.685.8100
Email: debradel@uw.edu
 

Observational and Clinical Research Studies

ENROLL-HD
(now enrolling)

previously COHORT

READ MORE
Enroll-HD study is a new international study that involves North America, Europe, South America and parts of Asia. Data from those of you who have already contributed to COHORT (with your permission) will added to Enroll-HD.

This study is an active collaboration of HD patients, individuals born at risk for HD (regardless of whether they have been tested genetically), and their families. It requires about a half day visit once a year. This study is vital to the more rapid development of treatments for HD therapeutics and completion of clinical trials. Visit EnrollHD.org for more information and updates.

Transportation reimbursement available.  

Booth Gardner Parkinson’s Care Center (Evergreen Neuroscience Center)
Dr. Pinky Agarwal,
Primary Investigator

Anna Fierro,
Coordinator
12039 NE 128th Street, Suite 300
Kirkland, WA 98034
Phone: 425-899-5387
Fax: 425-899-3147
Email: amfierro@
evergreenhealthcare.org
 

University of Washington Department of Neurology
Dr. Ali Samii,
Primary Investigator

Debra Del Castillo,
Research Coordinator
Phone: 206.543.3647
Fax: 206.685.8100
Email: debradel@uw.edu  

Completed Studies

Muscle and Brain Biomarker Study

The purpose of the study was to improve our ability to measure mitochondrial energy levels. No results officially reported. After limited study due to loss of funding this study was terminated.
Predict-HD To learn more about the progression of gene carriers from pre-symptomatic to diagnosis and progress of symptoms after diagnosis. This study was completed. Similar study is part of Enroll HD.
 

Completed Positive Drug Trials

Tetrabenazine (Xenazine)
This FDA approved drug showed benefit in treating HD chorea.

Deutetrabenazine (Austedo)
This FDA approved drug showed benefit in treating HD chorea with fewer side effects reported for this drug than in the earlier tetrabenazine trial.


Completed Negative Drug Trials

Pridopidine
Though early trials looked promising this drug failed to show benefit.

PDE-10 Inhibiter
PDE-10 Inhibitor drug. Terminated after adverse events reported.

CREATINE
Phase 3 clinical trial testing creatine failed to show benefit.

PDT2 Inhibitor

Though early trials looked promising this experimental drug failed in Phase 3 testing.
COENZYME Q10 Phase 3 clinical trial that testing Coenzyme Q10 failed to show benefit.
 
Dimebon
Phase 3 failed to show benefit.