Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington’s Disease: Data from Enroll-HD

Abstract Introduction Chorea is the primary manifestation of Huntington’s disease. Different clinicians pursue varied approaches to chorea management, and real-world evidence describing them is needed. The objective of this study was to assess the presence and severity of chorea, chorea pharmacother...

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Main Authors: Erin Furr Stimming, Daniel O. Claassen, Ginny P. Sen, Olga Klepitskaya, Michael Serbin, Hyunwoo Kim, Sean C. Hinton, Dietrich Haubenberger
Format: Article
Language:English
Published: Adis, Springer Healthcare 2025-01-01
Series:Neurology and Therapy
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Online Access:https://doi.org/10.1007/s40120-024-00703-9
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author Erin Furr Stimming
Daniel O. Claassen
Ginny P. Sen
Olga Klepitskaya
Michael Serbin
Hyunwoo Kim
Sean C. Hinton
Dietrich Haubenberger
author_facet Erin Furr Stimming
Daniel O. Claassen
Ginny P. Sen
Olga Klepitskaya
Michael Serbin
Hyunwoo Kim
Sean C. Hinton
Dietrich Haubenberger
author_sort Erin Furr Stimming
collection DOAJ
description Abstract Introduction Chorea is the primary manifestation of Huntington’s disease. Different clinicians pursue varied approaches to chorea management, and real-world evidence describing them is needed. The objective of this study was to assess the presence and severity of chorea, chorea pharmacotherapy, and treatment practice, and patterns in a large natural-history cohort with Huntington’s disease. Methods The Enroll-HD research platform Periodic Dataset 5.0 was used to select subjects. Outcomes included demographics, disease-related baseline characteristics (Primary Analysis Set), and treatment patterns (Treatment Analysis Set). Results A total of 2590 manifest participants comprised the Primary Analysis Set with 1040 in the Treatment Analysis Set; 96.8% of participants had chorea. Mean Unified Huntington’s Disease Rating Scale scores for Total Maximal Chorea, Total Motor Score, and Total Functional Capacity were 9.6, 39.5, and 7.8, respectively. During the observation period from June 2012 to October 2020, 906 (36.1%) participants received treatment for chorea. Among these, the most common first-line therapies were monotherapy VMAT2 inhibitors (49.9%) and antipsychotics (27.7%), while 7.8% of participants discontinued first-line therapy. Of those receiving VMAT2 inhibitors or antipsychotics as first line, 92% and 84%, respectively, remained on VMAT2 inhibitors or antipsychotics alone or in combination for the duration of the study. The most common second-line treatment was combination therapy. Conclusions Only 36.1% of participants with chorea were taking a medication indicated for chorea, and, while 49.9% of treated participants received VMAT2 inhibitors first-line, approximately half were prescribed off-label alternatives. It is unclear why patients with indications for treatment were untreated or why off-label alternatives were prescribed. Future research should elaborate on these observations.
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spelling doaj-art-69a54195433c49e0b64d67655eb45b082025-08-20T02:29:51ZengAdis, Springer HealthcareNeurology and Therapy2193-82532193-65362025-01-0114374375610.1007/s40120-024-00703-9Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington’s Disease: Data from Enroll-HDErin Furr Stimming0Daniel O. Claassen1Ginny P. Sen2Olga Klepitskaya3Michael Serbin4Hyunwoo Kim5Sean C. Hinton6Dietrich Haubenberger7The University of Texas Health Science Center at HoustonVanderbilt University Medical CenterHealth Economics and Outcomes Research, Neurocrine Biosciences, Inc.Health Economics and Outcomes Research, Neurocrine Biosciences, Inc.Health Economics and Outcomes Research, Neurocrine Biosciences, Inc.Health Economics and Outcomes Research, Neurocrine Biosciences, Inc.Health Economics and Outcomes Research, Neurocrine Biosciences, Inc.Health Economics and Outcomes Research, Neurocrine Biosciences, Inc.Abstract Introduction Chorea is the primary manifestation of Huntington’s disease. Different clinicians pursue varied approaches to chorea management, and real-world evidence describing them is needed. The objective of this study was to assess the presence and severity of chorea, chorea pharmacotherapy, and treatment practice, and patterns in a large natural-history cohort with Huntington’s disease. Methods The Enroll-HD research platform Periodic Dataset 5.0 was used to select subjects. Outcomes included demographics, disease-related baseline characteristics (Primary Analysis Set), and treatment patterns (Treatment Analysis Set). Results A total of 2590 manifest participants comprised the Primary Analysis Set with 1040 in the Treatment Analysis Set; 96.8% of participants had chorea. Mean Unified Huntington’s Disease Rating Scale scores for Total Maximal Chorea, Total Motor Score, and Total Functional Capacity were 9.6, 39.5, and 7.8, respectively. During the observation period from June 2012 to October 2020, 906 (36.1%) participants received treatment for chorea. Among these, the most common first-line therapies were monotherapy VMAT2 inhibitors (49.9%) and antipsychotics (27.7%), while 7.8% of participants discontinued first-line therapy. Of those receiving VMAT2 inhibitors or antipsychotics as first line, 92% and 84%, respectively, remained on VMAT2 inhibitors or antipsychotics alone or in combination for the duration of the study. The most common second-line treatment was combination therapy. Conclusions Only 36.1% of participants with chorea were taking a medication indicated for chorea, and, while 49.9% of treated participants received VMAT2 inhibitors first-line, approximately half were prescribed off-label alternatives. It is unclear why patients with indications for treatment were untreated or why off-label alternatives were prescribed. Future research should elaborate on these observations.https://doi.org/10.1007/s40120-024-00703-9AntipsychoticsChoreaHuntington’s diseaseVMAT2 inhibitors
spellingShingle Erin Furr Stimming
Daniel O. Claassen
Ginny P. Sen
Olga Klepitskaya
Michael Serbin
Hyunwoo Kim
Sean C. Hinton
Dietrich Haubenberger
Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington’s Disease: Data from Enroll-HD
Neurology and Therapy
Antipsychotics
Chorea
Huntington’s disease
VMAT2 inhibitors
title Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington’s Disease: Data from Enroll-HD
title_full Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington’s Disease: Data from Enroll-HD
title_fullStr Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington’s Disease: Data from Enroll-HD
title_full_unstemmed Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington’s Disease: Data from Enroll-HD
title_short Longitudinal Treatment Patterns of Chorea in North American Patients with Huntington’s Disease: Data from Enroll-HD
title_sort longitudinal treatment patterns of chorea in north american patients with huntington s disease data from enroll hd
topic Antipsychotics
Chorea
Huntington’s disease
VMAT2 inhibitors
url https://doi.org/10.1007/s40120-024-00703-9
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