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Updated: Oct 21, 2025

Whole-brain Segmentation and Change-point Analysis of Anatomical Brain MRI—Application in Premanifest Huntington's Disease
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Whole-brain Segmentation and Change-point Analysis of Anatomical Brain MRI—Application in Premanifest Huntington's Disease

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

Swati Sathe1, Jen Ware1, Jamie Levey1

  • 1CHDI Management/CHDI Foundation, Princeton, NJ, United States.

Frontiers in Neurology
|September 6, 2021
PubMed

Insights

Enroll-HD is a global research platform and observational study for Huntington

Area of Science:

  • Clinical research
  • Neurodegenerative diseases
  • Observational studies

Background:

  • Huntington's disease (HD) requires robust clinical research infrastructure for therapeutic development.
  • Existing research efforts needed a unified platform for data and sample collection.

Purpose of the Study:

  • To establish an integrated global clinical research platform for Huntington's disease (HD).
  • To facilitate the development of therapeutics for HD by creating a well-characterized research cohort.

Main Methods:

  • Enroll-HD operates as a worldwide observational study, collecting clinical data and biosamples.
  • Utilizes a flexible Electronic Data Capture (EDC) system and a comprehensive monitoring infrastructure.
  • Employs standardized protocols, training, and documentation across 159 sites in 21 countries.

Main Results:

  • Recruited nearly 25,000 participants across four continents.
  • Generated a large, rich clinical database and associated biosamples.
  • Facilitated access to clinical datasets and biosamples for verified researchers.

Conclusions:

  • Enroll-HD provides a low-burden entry point for participants into HD research.
  • The platform significantly expedites Huntington's disease research by providing accessible data and biosamples.
  • Standardization and data quality are key operational features enabling global research collaboration.

Keywords:
Enroll-HDHuntington's diseaseclinical research platformdisease networklongitudinal observational cohort studyregistry

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