TRACK HD Cohort - DPUK Data Portal

Cohort Descriptives

Variable	Response
Cohort Name	TRACK HD
Cohort Acronym	TRACK HD
DOI	Tabrizi, S. (2017). TRACK HD [Data set]. Dementias Platform UK. https://doi.org/10.48532/045000
Study Overview	TRACK HD is a prospective observational biomarker study in participants with premanifest and early Huntington's disease (HD). Track HD assessed longitudinal data collected at baseline, 12 months, 24 and 36 months at sites in Leiden (Netherlands), London (UK), Paris (France), and Vancouver (Canada). Participants were individuals without HD but carrying the mutant HTT gene (ie, premanifest HD), patients with early HD, and healthy control individuals matched by age and sex to the combined HD groups. Data were collected with 3T MRI, clinical, cognitive, quantitative motor, oculomotor, and neuropsychiatric assessments.
#Subjects at Baseline	123 controls, 120 premanifest gene carriers, and 123 early HD (Stage 1 or Stage 2).
Institution Name	University College London
Department Name	UCL Institute of Neurology
City	London
Study/Database Website	http://hdresearch.ucl.ac.uk/completed-studies/track-hd/
Principal Investigator (PI)	Prof Sarah Tabrizi
Key Study References	Please see Literature section
Population Based Study?	No
Family Based Study?	Yes
Clinical based sample?	Yes
Is there follow-up data available?	Yes
Were participants included prior to development of dementia (may refer to controls only)?	Yes
Were participants included prior to development of MCI (may refer to controls only)?	Yes
How is data collected?	In person
Who carries out data collection?	Interviewers and Clinicans
Does this take place in participants' homes or at a central location?	Central
Do participants take part individually or are families/partners involved?	Individually: Control participants were purposefully selected if they were gene negative or partners of people with HD.
Dementia cases ascertained as part of study:	Yes
Diagnosis based on review of existing clinical data	No
Was diagnosis/primary outcomes made blind to exposure variables?	No
How many times followed up?	3
Study start date	01/01/2008 00:00:00
Study end date	31/12/2011 00:00:00
Is study ongoing?	No
Is study still recruiting?	No
Inclusion criteria	Premanifest gene carriers required a burden of pathology score greater than 250, on the basis of their medical records at the time of recruitment, and a total motor score of 5 or less in the motor assessment of the United Huntington's Disease Rating Scale (UHDRS), indicating no substantial motor signs. Aged between 18 and 65 years, ability to tolerate MRI and biosample collection. CAG repeat length more or equal to 40. HD groups had to have a total functional capacity of greater than 6 from the UHDRS. Controls were age-matched and gender-matched to individuals in the combined preHD and HD groups.
Exclusion criteria	Absence of major psychiatric disorder or history of significant head injury at time of enrolment. Concomitant significant neurological disorder. Significant medical illness. MRI contraindications. Predictable non-compliance. Any significant hand injuries. Taking part in any concurrent clinical trials.

Administration

Sub-category	Variable type	Variables generally collected
	Study ID	Y
	Age	Y
	Sex	Y

Sociodemographic

Sub-category	Variable type	Variables generally collected
	Age	Y
	Age at time of diagnosis of dementia	Y
	Age at last follow-up	Y
	Sex	Y
	Ethnicity	Y
	Years of education	Y
	Level of education	Y
	Employment status	Y

Physical Health Status

Sub-category	Variable type	Variables generally collected
	Cardiovascular disease data	Y
	Myocardial infarction	Y
	Medication use for CVD	Y
	Hypertension	Y
	Olfactory sensitivity	Y
	Cancer	Y
	Diabetic Status	Y
	Stroke data	Y
	Stroke type	Y
	Head trauma data	Y
	Loss of consciousness	Y
	Head trauma severity	Y

Healthcare Utilisation

Sub-category	Variable type	Variables generally collected
	Medication use	Y
	Medication use for CVD	Y

Psychological Status

Sub-category	Variable type	Variables generally collected
	Short Form (SF) 36	Y
	Quality of life index QoLI	Y
	HD specific QoL questionnaire (HDQ)	Y
	Personality evaluation	Y
	Sleep assessment questionnaires	Y

Mental Health Status

Sub-category	Variable type	Variables generally collected
	Beck Depression Inventory	Y
	Hospital anxiety depression scale/psychiatry (HADS)	Y
	Apathy evaluation	Y
	Anxiety measure	Y

Cognitive Status

Sub-category	Variable type	Variables generally collected
	Huntington's disease	Y
	Subjective complaint	Y

Lifestyle

Sub-category	Variable type	Variables generally collected
	Smoking	Y
	Current smoking	Y
	Former smoking	Y
	Alcohol	Y
	Units per day/week vs weekend	Y
	Abstainers/former users	Y
	Drugs of abuse assessment	Y
	Study specific questionnaire about exercise and physical activity across the lifespan	Y

Physical Environment

Sub-category	Variable type	Variables generally collected
	Living situation (part of the UHDRS)	Y

Physical Examination

Sub-category	Variable type	Variables generally collected
	Weight (assessed before onset of dementia)	Y
	Height (assessed before onset of dementia)	Y
	Extrapyramidal symptoms (assessed before onset of dementia)	Y
	Anthropometry (assessed before onset of dementia)	Y
	Gait assessment (assessed before onset of dementia)	Y
	Opthalmic examination (assessed before onset of dementia)	Y
	Acuity (assessed before onset of dementia)	Y
	Colour vision	Y
	Grip strength	Y
	Tongue force	Y
	Speed of finger tapping	Y
	BMI	Y

Biosample Assays

Sub-category	Variable type	Variables generally collected
	Plasma	Y
	RNA	Y
	DNA	Y
	Serum	Y

Digital Phenotyping

Sub-category	Variable type	Variables generally collected
	Visual Memory	Y
	Visuospatial Function	Y
	Attention	Y
	Reaction time	Y
	IQ data	Y
	NART	Y

Imaging

Sub-category	Variable type	Variables generally collected
	Structural T1	Y
	Diffusion imaging (DTI/DWI)	Y
	PET	Y
	In vivo Spectroscopy	Y

Genomics

Sub-category	Variable type	Variables generally collected
	HTT (Subgroup)	Y