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A Descriptive Analysis of a Real-World Population With Huntington Disease-Associated Chorea (HDAC) Treated With Tetrabenazine: Findings From an Electronic Medical Records (EMR) Database

R. Iver, D. Alevras, S. Gandhi, T. Schilling, V. Abler, F. Cao, K. Johnson, K. Anderson (Frazer, PA, USA)

Meeting: 2017 International Congress

Abstract Number: 486

Keywords: Tetrabenazine

Session Information

Date: Tuesday, June 6, 2017

Session Title: Huntington's Disease

Session Time: 1:45pm-3:15pm

Location: Exhibit Hall C

Objective: To examine clinical and treatment information about HDAC in patients (pts) prescribed tetrabenazine (TBZ).

Background: Huntington disease is a hereditary movement disorder, with chorea as the most prominent feature. Currently, TBZ is the only FDA-approved treatment for HDAC; however, there are tolerability concerns and neuropsychiatric adverse events such as depression.

Methods: HDAC pts were identified in EMRs using the Explorys platform and grouped into those treated with TBZ and those treated with other medications. Pts with ≥1 TBZ prescription and complete dosing information were included in the analysis. TBZ daily dosage was calculated using pill strength and daily pill count. In the TBZ cohort, comorbid depression diagnosis, antidepressant dosage, and most frequent diagnoses in pts discontinuing TBZ therapy or switching to other therapies were examined.

Results: 2047 HDAC pts were identified, with 14% currently treated with TBZ (n=295 TBZ, n=1752 other medications). Over 50% of HDAC pts taking TBZ were covered by federal insurance. For the dosing analysis, the dataset yielded 126 pts with ≥1 TBZ prescription record and signature information. Average daily dose was ≤50 mg in 80% and ≤37.5 mg in 63% of pts; 72% were instructed to take their medication once or twice a day. Most common daily dose in pts initiated on TBZ was 25 mg. For the antidepressant dosing analysis, 180 pts with nonmissing information were identified, 93 (52%) of whom had evidence of antidepressant use. Of these, 47 (51%) initiated antidepressants only after TBZ initiation. A total of 122 pts (67.8%) either discontinued TBZ or switched to another therapy during the study period (start of each patient’s medical record to 10/7/2016). The most frequent neurological- or psychiatric-related diagnoses in these 122 pts were depression (39%), dysphagia (36%), major depressive disorder (one episode) (29%), insomnia (23%), mood disorder (20%), and psychotic disorder (19%).

Conclusions: This study using EMR data shows real-world use of TBZ in HDAC pts. The low use of TBZ treatment, high rates of discontinuation or switching of TBZ, and lower-than-expected mean daily doses highlight an unmet need for alternative chorea treatment options with improved risk–benefit profiles in these pts.

Presented at: AMCP annual meeting; March 27–30, 2017; Denver, CO, USA

To cite this abstract in AMA style:

R. Iver, D. Alevras, S. Gandhi, T. Schilling, V. Abler, F. Cao, K. Johnson, K. Anderson. A Descriptive Analysis of a Real-World Population With Huntington Disease-Associated Chorea (HDAC) Treated With Tetrabenazine: Findings From an Electronic Medical Records (EMR) Database [abstract]. Mov Disord. 2017; 32 (suppl 2). https://www.mdsabstracts.org/abstract/a-descriptive-analysis-of-a-real-world-population-with-huntington-disease-associated-chorea-hdac-treated-with-tetrabenazine-findings-from-an-electronic-medical-records-emr-database/. Accessed June 14, 2025.
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