Huntington's Disease

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Who is this for?
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4FDA treatments9Active trials19Specialists8Treatment centers2Financial resources

Where are you in your journey?

UniteRare data is sourced from FDA.gov, ClinicalTrials.gov, Orphanet, OMIM, and NORD.
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Overview

Huntington's Disease is treated with 5 medications in our database, including Tetrabenazine, tetrabenazine, Austedo, AUSTEDO, AUSTEDO XR, SEZABY, TETRABENAZINE. 5 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Bausch Health, Lundbeck, Teva, Sun. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Huntington's Disease treatment below.

Inheritance

Autosomal dominant

Passed on from just one parent; each child has about a 50% chance of inheriting it

Age of Onset

Adult

Begins in adulthood (age 18 or older)

NORD ↗

FDA & Trial Timeline

10 events
Nov 2025A Study to Evaluate the Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of RG6496 in Huntington's Disease

Hoffmann-La Roche — PHASE1

TrialRECRUITING
Jul 2025Comparison of Two Cognitive-Motor Rehabilitation Approaches Via Exergames: a Study of Cognitive, Motor and Behavioral Functions in Huntington's Disease Patients

University Hospital, Angers — NA

TrialRECRUITING
Nov 2024Facilitating Effective Eating With DoddleBags: A Single-Arm Acceptability Study Of DoddleBags to Assess Impact on Self Feeding Behaviours in a Huntington's Disease Population

University of Hull — NA

TrialRECRUITING
Oct 2024A Study to Evaluate ALN-HTT02 in Adult Patients With Huntington's Disease

Alnylam Pharmaceuticals — PHASE1

TrialRECRUITING
Sep 2021Biology-Driven Cognitive Profiling in Huntington's Disease

Fundació Institut de Recerca de l'Hospital de la Santa Creu i Sant Pau

TrialACTIVE NOT RECRUITING
Sep 2019Safety and Proof-of-Concept (POC) Study With AMT-130 in Adults With Early Manifest Huntington's Disease

UniQure Biopharma B.V. — PHASE1, PHASE2

TrialACTIVE NOT RECRUITING
Jan 2017HDClarity: a Multi-site Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington's Disease

University College, London

TrialRECRUITING
Jul 2012Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort

CHDI Foundation, Inc.

TrialRECRUITING
Aug 2008

Xenazine: FDA approved

First drug approved by FDA specifically for Huntington disease chorea.

FDAcompleted
Jul 2005Child to Adult Neurodevelopment in Gene Expanded Huntington's Disease

Peggy C Nopoulos

TrialRECRUITING

Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.

Treatments

4 available

Austedo

deutetrabenazine· Teva Pharmaceuticals■ Boxed Warning

Indicated for chorea associated with Huntington disease.

Xenazine

tetrabenazine· Lundbeck■ Boxed WarningOrphan Drug

First drug approved by FDA specifically for Huntington disease chorea.

SEZABY

phenobarbital sodium· Sun

Detailed copay and financial assistance information is not publicly available for this medication at this time. Please consult your pharmacist or the manufacturer's official patient support program fo

Austedo, AUSTEDO, AUSTEDO XR

· Teva

* Patient Copay Amount: As little as $0 per month * Maximum Annual Benefit Limit: Not Publicly Available * Core Eligibility Restrictions: Not available for patients eligible for Medicare, Medicaid, or

Clinical Trials

9 recruitingView all trials with filters →
Phase 12 trials
A Study to Evaluate ALN-HTT02 in Adult Patients With Huntington's Disease
Phase 1
Actively Recruiting
PI: Medical Director (Alnylam Pharmaceuticals) · Sites: Edmonton; Montreal +17 more · Age: 2570 yrs
A Study to Evaluate the Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of RG6496 in Huntington's Disease
Phase 1
Actively Recruiting
PI: Clinical Trials (Hoffmann-La Roche) · Sites: Ciudad Autonoma Bs As; Westmead, New South Wales +1 more · Age: 2565 yrs
N/A2 trials
Facilitating Effective Eating With DoddleBags: A Single-Arm Acceptability Study Of DoddleBags to Assess Impact on Self Feeding Behaviours in a Huntington's Disease Population
N/A
Actively Recruiting
PI: Callum Schofield · Sites: Cambridge; Cardiff +5 more · Age: 1899 yrs
Comparison of Two Cognitive-Motor Rehabilitation Approaches Via Exergames: a Study of Cognitive, Motor and Behavioral Functions in Huntington's Disease Patients
N/A
Actively Recruiting
PI: Clarisse SCHERER GAGOU, MD · Sites: Angers · Age: 1899 yrs
Other4 trials
Biology-Driven Cognitive Profiling in Huntington's Disease
Active
· Sites: Barcelona · Age: 3075 yrs
HDClarity: a Multi-site Cerebrospinal Fluid Collection Initiative to Facilitate Therapeutic Development for Huntington's Disease
Actively Recruiting
PI: Edward J Wild, MA, MB BChir, MRCP, PhD (University College, London) · Sites: Englewood, Colorado; Washington D.C., District of Columbia +37 more · Age: 1175 yrs
Child to Adult Neurodevelopment in Gene Expanded Huntington's Disease
Actively Recruiting
PI: Peggy C Nopoulos, MD (University of Iowa) · Sites: Sacramento, California; Iowa City, Iowa +4 more · Age: 630 yrs
Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
Actively Recruiting
PI: Bernhard G Landwehrmeyer, MD, PhD (University of Ulm) · Sites: Birmingham, Alabama; Phoenix, Arizona +181 more · Age: 1899 yrs

Specialists

19 foundView all specialists →
CS
Callum Schofield
Cambridge
Specialist

Rare Disease Specialist

12 Huntington's Disease publications
PM
Peggy C Nopoulos, MD
Sacramento, California
Specialist

Rare Disease Specialist

PI on 2 active trials
CM
Clarisse SCHERER GAGOU, MD
Angers
Specialist

Rare Disease Specialist

TY
Tianqi Yang
Specialist
2 Huntington's Disease publications
TM
Tiago A Mestre
Specialist
2 Huntington's Disease publications
MO
Mayke Oosterloo
Specialist
2 Huntington's Disease publications
MD
Marian DiFiglia
MA
Specialist
2 Huntington's Disease publications
MH
Michael R Hayden
Specialist
2 Huntington's Disease publications
SL
Sujin Lee
Specialist
2 Huntington's Disease publications
XL
Xiao-Jiang Li
Specialist
4 Huntington's Disease publications
SL
Shihua Li
Specialist
4 Huntington's Disease publications
MF
Mena Farag
Specialist
4 Huntington's Disease publications
CS
Cristina Sampaio
NJ
Specialist
3 Huntington's Disease publications
JG
James F Gusella
Specialist
3 Huntington's Disease publications
JL
Jong-Min Lee
Specialist
3 Huntington's Disease publications
MM
Marcy E MacDonald
Specialist
3 Huntington's Disease publications
HS
Helen Santini
Specialist
2 Huntington's Disease publications
HT
Huichun Tong
Specialist
2 Huntington's Disease publications
AL
Andres Lozano
Specialist
PI on 1 active trial

Treatment Centers

8 centers
⚗️ Trial Site

Westmead Hospital

📍 Westmead, New South Wales

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

Financial Resources

1 resources
Xenazine(tetrabenazine)Lundbeck

1 travel grant are also available for Huntington's Disease patients — see Travel Grants below ↓

Travel Grants

1 grants

HealthWell Foundation: Huntington's Disease - Medicare Access

HealthWell Foundation

Apply ↗

Community

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Latest news about Huntington's Disease

Disease timeline:

New trial: Facilitating Effective Eating With DoddleBags: A Single-Arm Acceptability Study Of DoddleBags to Ass

Phase NA trial recruiting. DoddleBags

New trial: Comparison of Two Cognitive-Motor Rehabilitation Approaches Via Exergames: a Study of Cognitive, Mot

Phase NA trial recruiting. Synergistic management

New trial: A Study to Evaluate the Safety, Tolerability, Pharmacokinetics, and Pharmacodynamics of RG6496 in Hu

Phase PHASE1 trial recruiting. RG6496

Caregiver Resources

NORD Caregiver Resources

Support, advocacy, and financial assistance for caregivers of rare disease patients.

Mental Health Support

Rare disease caregiving can be isolating. Connect with counseling and peer support.

Family & Caregiver Grants

Financial assistance programs specifically for caregivers of rare disease patients.

Social Security Disability

Learn how rare disease patients may qualify for SSDI/SSI benefits.

Common questions about Huntington's Disease

What is Huntington's Disease?

Huntington's Disease is treated with 5 medications in our database, including Tetrabenazine, tetrabenazine, Austedo, AUSTEDO, AUSTEDO XR, SEZABY, TETRABENAZINE. 5 of these have manufacturer assistance programs available to help reduce out-of-pocket costs. Medications are manufactured by Bausch Health, Lundbeck, Teva, Sun. Patients and caregivers can find copay cards, patient assistance programs, and travel grants for Huntington's Disease treatment below.

How is Huntington's Disease inherited?

Huntington's Disease follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.

At what age does Huntington's Disease typically begin?

Typical onset of Huntington's Disease is adult. Age of onset can vary across affected individuals.

Are there clinical trials for Huntington's Disease?

Yes — 9 recruiting clinical trials are currently listed for Huntington's Disease on UniteRare. See the clinical trials section on this page for phase, sponsor, and site details sourced from ClinicalTrials.gov.

Which specialists treat Huntington's Disease?

19 specialists and care centers treating Huntington's Disease are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.

What treatment and support options exist for Huntington's Disease?

3 FDA-approved treatments and 2 patient support programs are currently tracked on UniteRare for Huntington's Disease. See the treatments and support programs sections for copay assistance, eligibility, and contact details.