{"title":"亨廷顿舞蹈病治疗和研究的差异。","authors":"Ashley Madera, Clare Schrodt, Adys Mendizabal","doi":"10.1097/WCO.0000000000001376","DOIUrl":null,"url":null,"abstract":"<p><strong>Purpose of review: </strong>Disparities in care and outcomes are well described in common neurologic disorders; however, less is known about disparities in rare diseases such as Huntington's disease (HD). This review summarizes HD epidemiology in the US and globally while highlighting disparities in HD diagnosis and outcomes across various HD groups. The review also discusses how the lack of diversity in HD research threatens the validity of clinical trials and raises concerns about global accessibility to emerging therapies.</p><p><strong>Recent findings: </strong>Global HD prevalence and incidence vary worldwide, though the highest numbers are reported in Latin American cluster regions. Within North America, there are disparities in diagnosis and outcomes among Black and Latino patients. Socioeconomic status, educational attainment, and sex were also associated with differences in diagnosis, access, and outcomes. Many of the recent studies in this review used the ENROLL-HD longitudinal study. Yet, the dataset is 90% White Non-Hispanic, leading to an incomplete understanding of how HD manifests in diverse groups.</p><p><strong>Summary: </strong>Racial, sex, and socioeconomic disparities exist in HD care and research. Addressing these disparities is imperative in improving access to HD care, clinical trial participation, and disease-specific outcomes for all patients with HD in the US and worldwide.</p>","PeriodicalId":11059,"journal":{"name":"Current Opinion in Neurology","volume":" ","pages":""},"PeriodicalIF":4.1000,"publicationDate":"2025-05-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Disparities in Huntington's disease care and research.\",\"authors\":\"Ashley Madera, Clare Schrodt, Adys Mendizabal\",\"doi\":\"10.1097/WCO.0000000000001376\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Purpose of review: </strong>Disparities in care and outcomes are well described in common neurologic disorders; however, less is known about disparities in rare diseases such as Huntington's disease (HD). This review summarizes HD epidemiology in the US and globally while highlighting disparities in HD diagnosis and outcomes across various HD groups. The review also discusses how the lack of diversity in HD research threatens the validity of clinical trials and raises concerns about global accessibility to emerging therapies.</p><p><strong>Recent findings: </strong>Global HD prevalence and incidence vary worldwide, though the highest numbers are reported in Latin American cluster regions. Within North America, there are disparities in diagnosis and outcomes among Black and Latino patients. Socioeconomic status, educational attainment, and sex were also associated with differences in diagnosis, access, and outcomes. Many of the recent studies in this review used the ENROLL-HD longitudinal study. Yet, the dataset is 90% White Non-Hispanic, leading to an incomplete understanding of how HD manifests in diverse groups.</p><p><strong>Summary: </strong>Racial, sex, and socioeconomic disparities exist in HD care and research. Addressing these disparities is imperative in improving access to HD care, clinical trial participation, and disease-specific outcomes for all patients with HD in the US and worldwide.</p>\",\"PeriodicalId\":11059,\"journal\":{\"name\":\"Current Opinion in Neurology\",\"volume\":\" \",\"pages\":\"\"},\"PeriodicalIF\":4.1000,\"publicationDate\":\"2025-05-21\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Current Opinion in Neurology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1097/WCO.0000000000001376\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Current Opinion in Neurology","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1097/WCO.0000000000001376","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Disparities in Huntington's disease care and research.
Purpose of review: Disparities in care and outcomes are well described in common neurologic disorders; however, less is known about disparities in rare diseases such as Huntington's disease (HD). This review summarizes HD epidemiology in the US and globally while highlighting disparities in HD diagnosis and outcomes across various HD groups. The review also discusses how the lack of diversity in HD research threatens the validity of clinical trials and raises concerns about global accessibility to emerging therapies.
Recent findings: Global HD prevalence and incidence vary worldwide, though the highest numbers are reported in Latin American cluster regions. Within North America, there are disparities in diagnosis and outcomes among Black and Latino patients. Socioeconomic status, educational attainment, and sex were also associated with differences in diagnosis, access, and outcomes. Many of the recent studies in this review used the ENROLL-HD longitudinal study. Yet, the dataset is 90% White Non-Hispanic, leading to an incomplete understanding of how HD manifests in diverse groups.
Summary: Racial, sex, and socioeconomic disparities exist in HD care and research. Addressing these disparities is imperative in improving access to HD care, clinical trial participation, and disease-specific outcomes for all patients with HD in the US and worldwide.
期刊介绍：
Current Opinion in Neurology is a highly regarded journal offering insightful editorials and on-the-mark invited reviews; covering key subjects such as cerebrovascular disease, developmental disorders, neuroimaging and demyelinating diseases. Published bimonthly, each issue of Current Opinion in Neurology introduces world renowned guest editors and internationally recognized academics within the neurology field, delivering a widespread selection of expert assessments on the latest developments from the most recent literature.
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