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Disparities in Huntington's disease care and research
Ashley Madera1, Clare Schrodt, Adys Mendizabal
1Department of Neurology, David Geffen School of Medicine at the University of California, Los Angeles (UCLA), Los Angeles, California, USA.
Current Opinion in Neurology
|May 21, 2025
Summary
Disparities in Huntington
Area of Science:
- Neurology and Rare Diseases
- Epidemiology and Health Disparities
Background:
- While disparities in common neurologic disorders are known, less is understood about inequities in rare diseases like Huntington's disease (HD).
- Understanding these disparities is crucial for equitable care and research in HD.
Purpose of the Study:
- To review Huntington's disease epidemiology globally and in the US.
- To highlight disparities in HD diagnosis and outcomes across diverse patient groups.
- To discuss the impact of limited diversity in HD research on clinical trials and therapy accessibility.
Main Methods:
- Systematic review of existing literature on Huntington's disease epidemiology.
- Analysis of data from studies, including the ENROLL-HD longitudinal study, focusing on demographic and socioeconomic factors.
- Examination of research datasets for representation of diverse populations.
Main Results:
- Global Huntington's disease prevalence and incidence vary, with higher numbers in Latin American regions.
- Significant disparities in diagnosis and outcomes exist for Black and Latino patients in North America.
- Socioeconomic status, education, and sex are associated with differences in HD diagnosis, access to care, and outcomes.
- The dominant White Non-Hispanic demographic (90%) in key research datasets like ENROLL-HD limits understanding of HD in diverse groups.
Conclusions:
- Racial, sex, and socioeconomic disparities are evident in Huntington's disease care and research.
- Addressing these inequities is essential for improving access to care, clinical trial participation, and outcomes for all HD patients.
- Increased diversity in HD research is critical for validating clinical trial results and ensuring global access to new therapies.
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