ArticleMovement disorders clinical practice
Data Analytics from Enroll-HD, a Global Clinical Research Platform for Huntington's Disease.
Article in Movement disorders clinical practice. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT01574053 (Enroll -HD), which is not on this map. Cited by 108 papers, 2 of them syntheses that pooled it.
What it found
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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.
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.
Enroll -HD: A Prospective Registry Study in a Global Huntington's Disease Cohort
Who cites it
108 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Huntington's disease in MENAT: systematic review and meta-analysis of prevalence, clinical features, and genetics.Journal of neurology · 2025Pooled it
- Pharmacological Treatment of Neuropsychiatric Symptoms in Huntington's Disease: A Systematic Review.Movement disorders clinical practice · 2025Pooled it
- Modeling Disease Progression and Placebo Response in Huntington Disease: Insights From Enroll-HD and GENERATION HD1 Cohorts.Neurology · 2025Trial
- Timing and Impact of Psychiatric, Cognitive, and Motor Abnormalities in Huntington Disease.Neurology · 2021Trial
- Living with a rare disease: Why lived experience must shape research.PLoS medicine · 2026Article
- In vivo mapping of striatal neurodegeneration in Huntington's disease with Soma and Neurite Density Imaging.eLife · 2026Article
- Exploring the association between antidepressants, progression and mortality in Huntington's disease.Brain : a journal of neurology · 2026Article
- Spontaneous speech and language measures as predictive biomarkers of clinically meaningful disease progression and neurodegeneration in Huntington's disease.Journal of neural transmission (Vienna, Austria : 1996) · 2026Article
- Higher educational attainment in Huntington disease families: evidence from the Enroll-HD study.Orphanet journal of rare diseases · 2026Article
- Substantia Nigra as Brainstem Signature in Pediatric-Onset Huntington's Disease: The RAREST-JHD Study.Movement disorders clinical practice · 2026Article
- From genes to trajectories: mapping genetic influences on Huntington's disease progression.Bioinformatics (Oxford, England) · 2026Article
- Sertraline treatment prevents motor dysfunction in a Huntington's disease mouse model and functional decline in patients.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics · 2025Article
- Huntington's chorea: emerging fields in therapeutics (Review).Neurogenetics · 2025Review
- Predictors of Health Care Utilization for Individuals With Manifest Huntington Disease.Neurology. Clinical practice · 2025Article
- Early Language Impairment as an Integral Part of the Cognitive Phenotype in Huntington's Disease.Annals of clinical and translational neurology · 2025Article
- Antidopaminergic Medications and Clinical Changes in Measures of Huntington's Disease: A Causal Analysis.Movement disorders : official journal of the Movement Disorder Society · 2025Article
- Specific contribution of cognitive and motor impairments with functional capacity and dependence in Huntington's disease.Journal of neurology · 2025Article
- Identifying time patterns in Huntington's disease trajectories using dynamic time warping-based clustering on multi-modal data.Scientific reports · 2025Article
- Total functioning capacity scale in Huntington's disease: natural course over time.Journal of neurology · 2025Article
- Striato-cortical connectivity patterns predict clinical profiles in Huntington's disease.NeuroImage. Clinical · 2025Article
48 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe study of complex neurodegenerative diseases is moving away from hypothesis-driven biological methods toward large scale multimodal approaches, requiring standardized collaborative efforts. Enroll-HD exemplifies such an integrated clinical research platform, designed and implemented to meet the research and clinical needs of Huntington's disease (HD). The aim of this study was to describe the unique organization of Enroll-HD and report baseline data analyses of its core study.
methodsThe Enroll-HD platform incorporates electronic data capture, biosampling, and a longitudinal observational study spanning four continents (ClinicalTrials.gov Identifier: NCT01574053). The primary study population includes HD gene expansion carriers (HDGECs; CAG expansion ≥36), subdivided into manifest/premanifest HD. The control population consists of genotype-negative first-degree relatives and family controls not genetically related. The study includes 10 core clinical assessments covering motor, cognitive, and behavioral domains.
resultsThis data set comprises 1,534 participants (HDGEC = 1,071; controls = 463). Participant retention was high; 42 participants prematurely withdrew from the study. Mean ± standard deviation SD CAG repeat size was 43.5 ± 3.5 for HDGECs and 19.8 ± 3.4 for controls. Motor and behavioral assessments identified numerical differences between controls and HDGECs (manifest > premanifest > controls). Functional and independence assessments were generally similar for the premanifest and control groups with overlap in range of scores obtained. For the majority of cognitive tests, there were large differences between participants with manifest HD and all other groups.
conclusionsThese first data from the Enroll-HD clinical research platform demonstrate the maturity and potential of the platform in collecting high-quality, clinically relevant data. Future data sets will be substantially larger as the platform expands longitudinally and regionally.
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Registered trials
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.