Evidence map›Paper›PMID 34484094›Full record

ReviewFrontiers in neurology2021

Enroll-HD: An Integrated Clinical Research Platform and Worldwide Observational Study for Huntington's Disease.

Swati Sathe, Jen Ware, Jamie Levey, Eileen Neacy, Robi Blumenstein, Simon Noble, Alzbeta Mühlbäck, Anne Rosser, G Bernhard Landwehrmeyer, Cristina Sampaio

Abstract readReview
In one paragraph

Review in Frontiers in neurology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 41 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
41citing papers in PubMed, 1 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

41 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Systematic Review of the Huntington's Disease Drug Development Pipeline, 2014 to 2025.Movement disorders : official journal of the Movement Disorder Society · 2026
    Pooled it
  2. Observational
  3. Review
  4. Article
  5. SPARCC: Semi-Parametric Robust Estimation in a Right-Censored Covariate Model.Journal of the American Statistical Association · 2026
    Article
  6. Article
  7. Article
  8. Article
  9. Article
  10. Article
  11. Observational
  12. Review
  13. Article
  14. Observational
  15. Neuroleptic malignant syndrome in Huntington disease.European journal of neurology · 2024
    Article
  16. Article
  17. Article
  18. Article
  19. Article
  20. Article
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

10 authors.

Swati SatheCHDI Management/CHDI Foundation, Princeton, NJ, United States.
Jen WareCHDI Management/CHDI Foundation, Princeton, NJ, United States.
Jamie LeveyCHDI Management/CHDI Foundation, Princeton, NJ, United States.
Eileen NeacyCHDI Management/CHDI Foundation, Princeton, NJ, United States.
Robi BlumensteinCHDI Management/CHDI Foundation, Princeton, NJ, United States.
Simon NobleCHDI Management/CHDI Foundation, Princeton, NJ, United States.
Alzbeta MühlbäckDepartment of Neurology, Ulm University, Ulm, Germany.
Anne RosserBrain Repair Group, School of Biosciences, Cardiff University, Cardiff, United Kingdom.
G Bernhard LandwehrmeyerDepartment of Neurology, Ulm University, Ulm, Germany.
Cristina SampaioCHDI Management/CHDI Foundation, Princeton, NJ, United States.

Funding

HCRW_ RFPPB-16A-1298Medical Research Council MR/L010305/1
6 · The paper itself

Abstract

Established in July 2012, Enroll-HD is both an integrated clinical research platform and a worldwide observational study designed to meet the clinical research requirements necessary to develop therapeutics for Huntington's disease (HD). The platform offers participants a low-burden entry into HD research, providing a large, well-characterized, research-engaged cohort with associated clinical data and biosamples that facilitates recruitment into interventional trials and other research studies. Additional studies that use Enroll-HD data and/or biosamples are built into the platform to further research on biomarkers and outcome measures. Enroll-HD is now operating worldwide in 21 countries at 159 clinical sites across four continents-Europe, North America, Latin America, and Australasia-and has recruited almost 25,000 participants, generating a large, rich clinical database with associated biosamples to expedite HD research; any researcher at a verifiable research organization can access the clinical datasets and biosamples from Enroll-HD and nested studies. Important operational features of Enroll-HD include a strong emphasis on standardization, data quality, and protecting participant identity, a single worldwide study protocol, a flexible EDC system capable of integrating multiple studies, a comprehensive monitoring infrastructure, an online portal to train and certify site personnel, and standardized study documents including informed consent forms and contractual agreements.

Indexed as

clinical research platformdisease networkEnroll-HDHuntington's diseaselongitudinal observational cohort studyregistry

Identifiers

PMID34484094
PMCPMC8416308

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.