HDNI (TRACK-HD)
Huntington's Disease NeuroImaging Initiative
Brain MRI from people with premanifest and early Huntington's disease and matched controls, collected in the TRACK-HD natural history study to find measures that track disease progression for clinical trials. Images were archived at LONI; curated copies are shared by CHDI under a data use agreement.
Overview
The Huntington's Disease NeuroImaging Initiative (HDNI) is the project on the LONI Image and Data Archive that holds the imaging of TRACK-HD, a multinational observational study of Huntington's disease (HD) sponsored by the CHDI Foundation. TRACK-HD followed carriers of the HD gene expansion, from about 16 years before predicted diagnosis to early stage 2 disease, alongside age- and sex-matched controls. It was run with trial-like quality control and blinded analysis to find imaging, motor, cognitive and psychiatric measures sensitive enough to serve as endpoints in therapeutic trials. The baseline paper states that the image data were archived at LONI. The LONI application page for HDNI is not open to new applicants. CHDI now distributes curated TRACK-HD and TrackOn-HD imaging in BIDS format after a signed data use agreement.
Composition
Enrollment began in January 2008 and the baseline visits ended in August 2008. Of 381 people enrolled, 366 formed the baseline cohort: 123 controls, 120 premanifest gene carriers (split at the median predicted time to diagnosis into 62 further from and 58 nearer to onset) and 123 people with early HD (77 in stage 1, 46 in stage 2). About 55% of each group were women, and ages ranged from 18.6 to 65.7 years. Participants came from four sites: Leiden, London, Paris and Vancouver, with 90 to 96 people each. The study planned three annual follow-up visits.
Acquisition
All participants had 3T MRI with T1- and T2-weighted protocols that were standardised across sites after a preparatory phase. The T1-weighted scan was a 3D MPRAGE acquired on Siemens or Philips scanners, with a different scanner model at each site. IXICO carried out quality control on all images.
Annotations
The archive holds images, not labels. Group membership (control, premanifest, early HD stage), CAG repeat length and the disease-burden score are part of the clinical data. Published analyses report caudate, putamen, whole-brain and cortical thickness measures from several pipelines.
Known limitations
No data descriptor reports the content or size of the LONI release, so only the published baseline cohort is counted here. Site and scanner model are confounded. The license text of the CHDI data use agreement is not public.
Cohort
Aggregate numbers from the sources below. Bars are relative to the 366 subjects.
Condition
Groups can overlap
- Healthy control 123 34%
- Huntington disease 123 34%
Country
- Canada 96 26%
- Netherlands 90 25%
- United Kingdom 90 25%
- France 90 25%
Age
range 18.6 to 65.7
No age bins reported.
Contrast / sequence
Groups can overlap
- T1-weighted 366 100%
License and access
Our reading of the license, not legal advice. Before you use the data, read the original license and confirm that your use is allowed. We take no responsibility for how you use a dataset. Full disclaimer
Sign a data use agreement, often reviewed by the provider
No published license or data use terms
The data holder has published no license and no data use terms. Any use, sharing or commercial right has to be agreed with the data holder, and nothing can be assumed to be allowed. Default copyright and data protection law still apply.
What you can do
- Commercial use Not stated
- Not stated
- Train ML models Not stated
- Create derived data Not stated
- Publish results Not stated
What you can share
- Share the data Not stated
- Share derived data Not stated
- Share trained models Not stated
What you must do
- Cite or credit Not stated
- Share alike Not stated
- Sign an agreement Not stated
- Ethics approval Not stated
- Manuscript review Not stated
- Release code Not stated
- Return results Not stated
- Delete after use Not stated
Limits
- No re-identification Not stated
- Location limits Not stated
Citation
Tabrizi SJ, Langbehn DR, Leavitt BR, et al. Biological and clinical manifestations of Huntington's disease in the longitudinal TRACK-HD study: cross-sectional analysis of baseline data. Lancet Neurol. 2009;8(9):791-801.
Sources
Every number on this page comes from one of these documents. Each chart names the table or page it is taken from. The raw numbers are in stats.csv.
- Tabrizi SJ et al. 2009, Biological and clinical manifestations of Huntington's disease in the longitudinal TRACK-HD study, cross-sectional analysis of baseline data, Lancet Neurology (author manuscript PMC3725974) paper
- van den Bogaard SJA et al. 2011, Early atrophy of pallidum and accumbens nucleus in Huntington's disease, Journal of Neurology paper
- Pustina D et al. 2024, Bridging Huntington's disease research with big data science, harmonized neuroimaging datasets from multiple studies, Imaging Neuroscience paper
- LONI Image and Data Archive, HDNI project login page (links to the TRACK-HD study site) website