|Brains for Dementia Research
|Thomas, A. (2017). BDR [Data set]. Dementias Platform UK. https://doi.org/10.48532/006000
|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).
|Brains for Dementia Research Coordinating Centre, Institute of Neuroscience
|Principal Investigator (PI)
|Population Based Study?
|Family Based Study?
|Clinical based sample?
|Is there follow-up data available?
|Were participants included prior to development of dementia (may refer to controls only)?
|Were participants included prior to development of MCI (may refer to controls only)?
|How is data collected?
|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:
|Diagnosis based on review of existing clinical data
|Was diagnosis/primary outcomes made blind to exposure variables?
|Study start date
|Is study ongoing?
|Is study still recruiting?
|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 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.