Evidence map›Paper›PMID 30868663›Full record

ArticleMovement disorders : official journal of the Movement Disorder Society2019

Huntington's disease in the United States: Variation by demographic and socioeconomic factors.

Emilie Bruzelius, Joseph Scarpa, Yiyi Zhao, Sanjay Basu, James H Faghmous, Aaron Baum

Abstract read
In one paragraph

Article in Movement disorders : official journal of the Movement Disorder Society, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
39citing papers in PubMed, 4 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

39 citing papers in PubMed, 4 syntheses or guidelines pooled it.

  1. Pooled it
  2. Pooled it
  3. Pooled it
  4. Prevalence and Incidence of Huntington's Disease: An Updated Systematic Review and Meta-Analysis.Movement disorders : official journal of the Movement Disorder Society · 2022
    Pooled it
  5. Article
  6. Article
  7. Article
  8. Article
  9. Disparities in Huntington's disease care and research.Current opinion in neurology · 2025
    Review
  10. Review
  11. Article
  12. Article
  13. Exploring Place of Death among Individuals with Huntington's Disease in the United States.Journal of the American Medical Directors Association · 2025
    Article
  14. Article
  15. Observational
  16. Review
  17. Article
  18. Article
  19. Article
  20. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Emilie BruzeliusIcahn School of Medicine at Mount Sinai, New York, New York, USA.
Joseph ScarpaIcahn School of Medicine at Mount Sinai, New York, New York, USA.
Yiyi ZhaoIcahn School of Medicine at Mount Sinai, New York, New York, USA.
Sanjay BasuStanford University School of Medicine, New York, New York, USA.
James H FaghmousStanford University School of Medicine, New York, New York, USA.
Aaron BaumIcahn School of Medicine at Mount Sinai, New York, New York, USA.

Funding

Incorporating genomics into the clinical care of diverse NYC childrenU01HG009610 · NHGRI · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · PI GELB, BRUCE D, HOROWITZ, CAROL R · 2017 to 2021
$17.0M
Cohort filtering models to identify social program effects on health disparitiesDP2MD010478 · NIMHD · STANFORD UNIVERSITY · PI BASU, SANJAY · 2015 to 2015
$2.4M
Probing networks underlying sleep and stress with multiscale dataF30MH106293 · NIMH · ICAHN SCHOOL OF MEDICINE AT MOUNT SINAI · PI SCARPA, JOSEPH · 2014 to 2018
$157k
NHGRI NIH HHS U01 HG009610NIMHD NIH HHS DP2 MD010478NIMH NIH HHS F30 MH106293
6 · The paper itself

Abstract

backgroundDespite extensive research regarding the etiology of Huntington's disease, relatively little is known about the epidemiology of this rare disorder, particularly in the United States where there are no national-scale estimates of the disease.

objectivesTo provide national-scale estimates of Huntington's disease in a U.S. population and to test whether disease rates are increasing, and whether frequency varies by race, ethnicity, or other factors.

methodsUsing an insurance database of over 67 million enrollees, we retrospectively identified a cohort of 3,707 individuals diagnosed with Huntington's disease between 2003 and 2016. We estimated annual incidence, annual diagnostic frequency, and tested for trends over time and differences in diagnostic frequency by sociodemographic characteristics.

resultsDuring the observation period, the age-adjusted cumulative incidence rate was1.22 per 100,000 persons (95% confidence interval: 1.53, 1.65), and age-adjusted diagnostic frequency was 6.52 per 100,000 persons (95% confidence interval: 5.31, 5.66); both rates remained relatively stable over the 14-year period. We identified several previously unreported differences in Huntington's disease frequency by self-reported sex, income, and race/ethnicity. However, racial/ethnic differences were of lower magnitude than have previously been reported in other country-level studies.

conclusionsIn these large-scale estimates of U.S. Huntington's disease epidemiology, we found stable disease frequency rates that varied by several sociodemographic factors. These findings suggest that disease patterns may be more driven by social or environmental factors than has previously been appreciated. Results further demonstrate the potential utility of administrative Big Data in rare disease epidemiology when other data sources are unavailable. © 2019 International Parkinson and Movement Disorder Society.

Indexed as

AdultAgedDatabases, FactualFemaleHumansHuntington DiseaseIncidenceMaleMiddle AgedPopulation SurveillancePrevalenceRegistriesSocioeconomic FactorsUnited StatesYoung AdultBig DataHuntington's diseaseincidence and prevalenceneurodegenerative diseasesneuroepidemiology

Identifiers

PMID30868663
PMCPMC6579693

What OpenQuestion holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.