Cohort Descriptives

Variable Response
Cohort Name Brains for Dementia Research
Cohort Acronym BDR
Study Overview Brains for Dementia Research is an initiative funded jointly by the Alzheimer’s Society and Alzheimer’s Research UK to address the shortage of brain tissue that is so essential for research into dementia. Brain tissue is collected alongside clinical and cognitive information gathered in life. BDR currently networks six brain banks with standardised procedures for brain handling over the sites, ensuring consistency across the sites.
#Subjects at Baseline 3,200 (2,600 living approx). 70% control and 30% dementia (all dementias).
Institution Name Newcastle University
Department Name Brains for Dementia Research Coordinating Centre, Institute of Neuroscience
City Newcastle
Study/Database Website

http://www.brainsfordementiaresearch.org.uk/

Principal Investigator (PI) Alan Thomas
Population Based Study? No
Family Based Study? No
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. Clinical staff: Research nurses and psychologists.
Does this take place in participants' homes or at a central location? Home and Central: Assessments are carried out in participants homes and in BDR clinics. Some follow up interviews are conducted by telephone.
Do participants take part individually or are families/partners involved? Family and Study partner. Study partners are not consented, and the study partner may change over the course of the study.
Dementia cases ascertained as part of study: No
Diagnosis based on review of existing clinical data No
Was diagnosis/primary outcomes made blind to exposure variables? No
Study start date 1/1/2009 12:00:00 AM
Is study ongoing? Yes
Is study still recruiting? Yes
Inclusion criteria Living in the UK. Willingness to register for brain donation, and take part in widely used clinical and psychometric measures until the time for brain donation comes. People with a diagnosis of dementia or MCI can register at any age, and those with no diagnosis of memory impairment can register from 65 years old.
Exclusion criteria Exclusion criteria are largely practical and related to the suitability of the donated brain tissue for research. This includes a diagnosis that indicates another brain bank might be more suitable, such as multiple sclerosis. Pre-existing conditions such as schizophrenia, bipolar disorder, brain tumours (including previous radiotherapy treatment to the head), major strokes, aneurysms, and other significant cerebrovascular incidents, can mean a person may not be an ideal ‘control’, or the brain structure is significantly changed. Infections such as meningitis, encephalitis, HIV, prion disease pose an infection risk to all coming in contact with the tissue, so also prevent brain donation.

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 last follow-up Y
Age at time of death Y
Sex Y
Ethnicity Y
Years of education Y
Level of education Y
Employment Status Y
Socioeconomic status Y

Physical Health Status

Sub-category Variable type Variables generally collected
Cancer Y
Diabetic Status Y
Stroke data Y
Transient Ischemic Attack Y

Health Care Utilisation

Sub-category Variable type Variables generally collected
Hospital utilisation Y
Admission to Nursing Home Y
Medication use (Drug coding system - interview report - medical history) Y
Medication use for CVD (Interview Report - medical history) Y

Life Functionality

Sub-category Variable type Variables generally collected
ADCS-ADL (Subgroup - Repeated collection) Y
Bristol Activities of Daily Living Scale Y
Clinical Dementia Rating Scale (CDR) - Repeated collection. Y
Global Deterioration Scale - Repeated Collection Y

Psychological Status

Sub-category Variable type Variables generally collected
NPI Y
NPI-Q Y

Mental Health Status

Sub-category Variable type Variables generally collected
Geriatric Depression Scale (GDS) Y
Cornell depression Scale Y

Cognitive Status

Sub-category Variable type Variables generally collected
Alzheimer's dementia Y
Lewy Body disease Y
Frontotemporal dementia Y
Vascular dementia Y
MCI Y
Subjective complaint Y

Lifestyle

Sub-category Variable type Variables generally collected
Smoking Y
Current smoking Y
Former smoking Y
Alcohol: Abstainers/former users Y

Physical Environment

Sub-category Variable type Variables generally collected
Living situation Y

Physical Examination

Sub-category Variable type Variables generally collected
Blood pressure - Systolic Diastolic BP Y
Hip/waist measures Y
Hearing Y
Hypotension (Interview report - medical history) Y
Carotid Plaques Y
Head trauma data Y
Loss of consciousness Y
Metabolic syndrome - if self-reported in medical history. Y

Biosample Assays

Sub-category Variable type Variables generally collected
Plasma (Repeated collection) Y
Serum (Repeated collection) Y
RNA (Repeated collection) Y
DNA (Repeated collection) Y
Autopsy data: Brain banking Y

Digital Phenotyping

Sub-category Variable type Variables generally collected
MMSE (Repeated collection) Y
MoCA (Repeated collection) Y
ADAS-Cog Y
CERAD Clinical and Neuropsychology Assessment. Y

Genomics

Variable type
The BDR cohort has exome sequencing and Neurochip data held on the DPUK Data Portal, with the remaining genomic data currently available via the EGA.

Imaging

Variable type