Title of cohort
Brains for Dementia Research
Name of Principal Investigator - Title
Name of Principal Investigator - First name
Name of Principal Investigator - Last name
Address of institution -Institution
Address of institution - Street address
Wolfson Centre for Age Related Diseases, Guy's Campus
Address of institution - City
Address of institution - Postcode
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?
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
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, Parkinsons and Alzheimers diseases |Katie Lunnon, University of Exeter, Methylomic profiling implicated cortical deregulation of ANK1 in Alzheimers 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:
Q4a. Study criteria: what is the age range of participants at recruitment? To:
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)?
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)?
Q7. What is the study design (select all that apply)?
Q8. Are your cases matched by
Q9a. Does your study include a specialised subset of control participants?
Q9b. If your study includes a specialised subset of control participants please describe
Q10a. i) Please enter the data collection start date
Q10a. ii) Please enter the data collection end date
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
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
Q13a. Please give information on the format and availability of data stored in a database (2)
Q13a. Please give information on the format and availability of data stored in a database (3)
Q13a. Please give information on the format and availability of data stored in a database (4)
Q13b. Please give information on the format and availability of data held as individual records (1)
Data is held as individual records
Q13b. Please give information on the format and availability of data held as individual records (2)
Q13b. Please give information on the format and availability of data held as individual records (3)
Q13b. Please give information on the format and availability of data held as individual records (4)
Please specify language used
Q14a. Is data available to other groups?
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?
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)?
Q17. Is information on biological characteristics available to other groups?
Types: Population Cohorts
Member States: United Kingdom
Diseases: Alzheimer's disease & other dementias
Database Categories: N/A
Database Tags: N/A
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