Title of cohort

    Brains for Dementia Research

    Acronym for cohort

    BDR

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Paul

    Name of Principal Investigator - Last name

    Francis

    Address of institution -Institution

    King's College London

    Address of institution - Street address

    Wolfson Centre for Age Related Diseases, Guy's Campus

    Address of institution - City

    London

    Address of institution - Postcode

    SE1 1UL

    Country

    United Kingdom

    Website
    Contact email
    Funding source

    Alzheimer's Research UK and Alzheimer's Society in association with Medical Research Council

    Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?

    Alzheimer's disease and other dementias

    Q1b. When are studies on the above condition(s) expected to become possible?

    Already possible

    Q2a. In a single sentence what is the stated aim of the cohort?

    To supply brain tissue and associated cognitive data for research to the neuroscience community, exercising responsible stewardship for the brain tissue and maximizing the potential benefit of this precious resource.

    Q2b. What distinguishes this cohort from other population cohorts?

    This cohort contains a high proportion of registered brain donors without dementia. Participants undergo regular cognitive testing and blood samples are also collected from some of the cohort.

    Q3a. i) Number of publications that involve use of your cohort to date

    161

    Q3a.ii) Please give up to three examples of studies to date (Principal Investigator, Institution, Title of Study)

    A Olmos-Alonso, University of Southampton, Pharmacological targeting of CSF1R inhibits microglial proliferation and prevents the progression of Alzheimer's-like pathology| Rita Guerreiro, UCL, Genome-wide analysis |of genetic correlation in dementia with Lewy bodies, Parkinson’s and Alzheimer’s diseases |Katie Lunnon, University of Exeter, Methylomic profiling implicated cortical deregulation of ANK1 in Alzheimer’s disease.

    Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available

    Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the population

    Q4a. Study criteria: what is the age range of participants at recruitment? Age in years From:

    65

    Q4a. Study criteria: what is the age range of participants at recruitment? To:

    until death

    Q4b. Study criteria: what are the inclusion criteria?

    Prospective donors must be over the age of 65

    Q4c. Study criteria: what are the exclusion criteria?

    Additional pathology (e.g. Brain tumour, major stroke) affecting suitability of brain tissue.

    Q5. What is the size of the cohort (i.e. how many participants have enrolled)?

    1,000-5,000 participants

    Q6a. Please describe what measures are used to characterise participants

    PAST HISTORY FROM CAMDEX, CLINICAL DEMENTIA RATING WORKSHEET (Study partner), BRISTOL ACTIVITIES OF DAILY LIVING SCALE (BADLS), NEUROPSYCHIATRIC INVENTORY, GLOBAL DEPRESSION SCALE (CORNELL SCALE FOR DEPRESSION IN DEMENTIA, GERIATRIC DEPRESSION SCALE), MINI MENTAL STATE EXAMINATION, TICS-M, MONTREAL COGNITIVE ASSESSMENT, MoCA-Blind, CLINICAL DEMENTIA RATING WORKSHEET (Participant), HEARING AND EYESIGHT IMPAIRMENT, OTHER PHYSICAL PARAMETERS (BLOOD PRESSURE, WAIST/HIP RATIO, GLOBAL DETERIORATION SCALE, HACHINSKI ISCHAEMIC SCORING SYSTEM, LIFESTYLE (DIET & EXERCISE)

    Q6b. Are there additional measures for participants with a clinical disorder?

    Q6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)?

    No

    If yes please specify

    Q7. What is the study design (select all that apply)?

    Prospective cohort|Longitudinal

    Q8. Are your cases matched by

    Q9a. Does your study include a specialised subset of control participants?

    No

    Q9b. If your study includes a specialised subset of control participants please describe

    Q10a. i) Please enter the data collection start date

    05/01/2008

    Q10a. ii) Please enter the data collection end date

    04/01/2018

    Q10a. iii) Is data collection for this study

    Data collection ongoing| Data analysis ongoing| Closed to new patients

    Q10b. If data collection is ongoing, are there plans to continue the cohort study beyond the current projected end date?

    Yes - intend to apply for funding

    Q11. Is data collected

    Only through the study

    Other please specify here

    Q12. Is there a system in place to enable re-contact with patients to ask about participation in future studies?

    Yes (participants given permission to be re-contacted via PIs)

    Q13a. Please give information on the format and availability of data stored in a database (1)

    Data summarised in database

    % available

    Q13a. Please give information on the format and availability of data stored in a database (2)

    No

    % available

    Q13a. Please give information on the format and availability of data stored in a database (3)

    No

    % available

    Q13a. Please give information on the format and availability of data stored in a database (4)

    No

    % available

    Other (please specify)

    % available

    Q13b. Please give information on the format and availability of data held as individual records (1)

    Data is held as individual records

    % available

    Q13b. Please give information on the format and availability of data held as individual records (2)

    No

    % available

    Q13b. Please give information on the format and availability of data held as individual records (3)

    No

    % available

    Q13b. Please give information on the format and availability of data held as individual records (4)

    No

    % available

    Please specify language used

    English

    Q14a. Is data available to other groups?

    Yes

    Q14b. If data is available to other groups what is the access policy/mechanisms for access?

    Apply to PI or co-ordinator at resource| Access independent of collaboration with PI| Access committee mechanism| Local/regional access| National access| International access| Access to industry| Access for pilot studies permitted| Resource has own ethics approval so usually no need for separate external ethics approval

    Q15. What data sharing policy is specified as a condition of use?

    No requirement to make data publicly available

    Q16a. Are tissues/samples/DNA available to other groups?

    Yes

    Q16b i) If yes, please describe below:

    Living donors: blood| Living donors: blood derivatives| Living donors: DNA| Post-mortem donors: brain| Post-mortem donors: spinal cord

    Q16b. ii) In what form are tissues/samples/DNA supplied?

    Primary Samples: Stabilised samples (frozen or fixed)

    Q16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q14 above)?

    Yes

    Q17. Is information on biological characteristics available to other groups?

    No

    Number of Patients

    % of total cohort

Types: Population Cohorts
Member States: United Kingdom
Diseases: Alzheimer's disease & other dementias
Years: 2016
Database Categories: N/A
Database Tags: N/A

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