Enroll-HD
Enroll-HD
About Enroll-HD
Enroll-HD is a clinical research platform and prospective observational study for Huntington’s disease families, intended to accelerate progress toward therapeutics.
The Enroll-HD study collects natural history data in HD individuals and controls. Established in July 2012, the study has generated a large and rich clinical database with associated biosamples to support research, including developing disease-progression and prognostic biomarkers, identifying clinically relevant phenotypic characteristics, and establishing endpoints for interventional trials.
The data elements and assessments captured in the Enroll-HD study are also illustrated below.
Clinical datasets
Available clinical datasets associated with this study are displayed below. These are made available free of charge. The data elements and assessments captured in the Enroll-HD study are also illustrated below.
Available via the Enroll-HD platform. Visit the Access page for more information.
Biosamples
Available biosamples associated with this study are displayed below, alongside aliquot sizes and biosample prices. There is a 20% discount on biosamples for academic use. Shipping and handling fees are provided separately on request, and depend on shipping type and distance.
Participant biosamples are not sold for profit. Biosample fees (i) are applied to partially offset the costs of collecting and storing the requested biosamples, and (ii) give people requesting biosamples a sense of the actual “cost” of their experiments.
Available via the Enroll-HD platform. Visit the Access page for more information.
Data from biosamples
Available biosample datasets (e.g., methylation data) associated with biosamples collected from this study are displayed below.
Available via the Enroll-HD platform. Visit the Access page for more information.
Enroll-HD
Data elements and assessments
The data elements and assessments captured in the Enroll-HD study are displayed below. These are collected annually at each study visit, unless otherwise indicated. Extended and optional assessments are completed at the discretion of the PI and participant, respectively.
General
- Participant disease category
- Sociodemographic data
- Reportable Event monitoring
- Mortality
Medical
- HD clinical characteristics
- HD medical history
- Comorbidities
- Pharmaco therapies
- Non-pharmaco therapies
- Nutritional supplements
Motor
- UHDRS® ’99 Motor
- UHDRS® ’99 Diagnostic Confidence Index
- Timed Up and Go
- 30 second Chair Stand Test
Function
- UHDRS® ’99 Total Functional Capacity
- UHDRS® ’99 Function Assessment Scale
- UHDRS® ’99 Independence Scale
Behavior
- Problem Behaviors Assessment (Short)
- Hospital Anxiety and Depression Scale
- Snaith Irritability Scale
- Columbia Suicide Severity Rating Scale
Cognition
- Symbol Digit Modality Test
- Stroop Word Reading Test
- Verbal Fluency Test (Category)
- Stroop Color Naming Test
- Stroop Interference Test
- Trail Making Tests (Parts A & B)
- Verbal Fluency Test (Letters)
- Mini Mental State Examination
Genotyping
- Research CAG genotyping
Quality of life
- Short Form Health Survey 12v2
- Caregivers Quality of Life Questionnaire
Health economics
- Client Services Receipt Inventory
- Work Productivity and Activity Impairment-Specific Health Problem
Family history
- Pedigree charting
Biosample
- Biosample provision for banking
Imaging
- Imaging data are not currently collected.
- Core
(Completed or updated at each visit)
- Extended
(Completed at the discretion of the PI)
- Optional
(Completed at the discretion of the Participant)
General
- Participant disease category
- Sociodemographic data
- Reportable Event monitoring
- Mortality
Medical
- HD clinical characteristics
- HD medical history
- Comorbidities
- Pharmaco therapies
- Non-pharmaco therapies
- Nutritional supplements
Motor
- UHDRS® ’99 Motor
- UHDRS® ’99 Diagnostic Confidence Index
- Timed Up and Go
- 30 second Chair Stand Test
Function
- UHDRS® ’99 Total Functional Capacity
- UHDRS® ’99 Function Assessment Scale
- UHDRS® ’99 Independence Scale
Behavior
- Problem Behaviors Assessment (Short)
- Hospital Anxiety and Depression Scale
- Snaith Irritability Scale
- Columbia Suicide Severity Rating Scale
Cognition
- Symbol Digit Modality Test
- Stroop Word Reading Test
- Verbal Fluency Test (Category)
- Stroop Color Naming Test
- Stroop Interference Test
- Trail Making Tests (Parts A & B)
- Verbal Fluency Test (Letters)
- Mini Mental State Examination
Genotyping
- Research CAG genotyping
Quality of life
- Short Form Health Survey 12v2
- Caregivers Quality of Life Questionnaire
Health economics
- Client Services Receipt Inventory
- Work Productivity and Activity Impairment-Specific Health Problem
Family history
- Pedigree charting
Biosample
- Biosample provision for banking
Imaging
- Imaging data are not currently collected.
- Core
(Completed or updated at each visit)
- Extended
(Completed at the discretion of the PI)
- Optional
(Completed at the discretion of the Participant)
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