Data available to researchers

Data from our assessment database is available from DPUK in a trusted research environment. Please contact us if you’d like to apply for access to that data. A data dictionary of the full set of data collected during a participant’s lifetime is available here

A more concise summary of the assessment data is available through DPUK, as detailed here

Post mortem data

Once a participant’s brain has been received by the brain bank, further data is available on the UK Brain banks network database of tissue samples. You can apply for access to post-mortem data separately here   .

The UK Brain banks network database of tissue samples   makes the following data available on all BDR participants afer a successful donation:

Basic Details

  • Brain Bank
  • Internal ID
  • Public Id (BBNId)
  • Alternative IDs
  • Cohort [None, BDR, Optima, ATP]
  • Donation date (rounded to year for data protection)
  • Date of Death (rounded to year for data protection)
  • Age of Donor (years)
  • Sex
  • Ethnicity
  • Max. Height (cm)
  • Max weight (Kg)

History

  • Clinical diagnoses
    • A collection of ICD-10 diagnoses are stored for each case
  • Clinical notes
  • Cause of Death
  • Agnonal state comment
  • Medication comment
  • Drugs/Toxins comment
  • Smoking history
  • Alcohol history

Pathology

  • Brain weight
  • Pathology findings
    • UKBBN have created a taxonomy of pathologies. A collection of pathologies are stored for each case
  • Neuropathological diagnosis
  • Brain pH by region
  • Post-mortem delay
  • Dates of pathology stages (for brain bank use only)

Genetics

  • Mutations
  • Polymorphisms
  • Protein Isoforms
  • Other genetic tests
  • VCF files from co-operating studies are available on request for all deceased BDR participants who have donated brain tissue. PLease contact us for details.

Assessments

  • Assessment data from BDR is also available in UKBBN for deceased participants.
  • There are multiple assessments per participant.

Tissue collected

  • The types of tissue collected for each case (for brain bank use only. Please contact them for availability)

Consents

  • Consent for use of the data. Commercial use, Animal research, Genetic data, Stem cells, Brain, Spinal cord.

Semi-quantitative measures

  • Only available to UKBBN by default, but can be provided by agreement with BDR.
  • A-beta, Tau, a-syn, TDP, BV-walls, WM Palor, Infarct are collected for each major brain region.