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 participants 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 that 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.