Title of cohortDetermining Factors and The Progression of The Onset of Alzheimer's Disease and Cognitive Impairment
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
Address of institution - City
Address of institution - Postcode
Funding sourceAlzheimer's Foundation Plan (Fondation Plan Alzheimer), PHRC, GE Healthcare, AVID
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?Identification and validation of biomarkers or combination of biomarkers that best predict the occurrence of dementia
Q2b. What distinguishes this cohort from other population cohorts?The largest naturalistic cohort on brain health, with a rigorous prospective design, extensive follow-up (at least 5 years), standardized procedures, multiple biomarkers (imaging, blood CSF) assessed with standardized acquisitions and analyses
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)B Dubois, APHP, The Insight Cohort| B Dubois, APHP, The Insight Cohort
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?Adults, either a recently evaluated (< 6 months) cognitive performance worse than one standard deviation to the mean in one or more domains or an isolated cognitive complaint (patient aged ? 60 years), Nondemented, Clinical Dementia Rating Scale (CDR) ?0.5
Q4c. Study criteria: what are the exclusion criteria?Guardianship, Meeting brain MRI exclusion criteria or refusing MRI, Illiteracy
Q5. What is the size of the cohort (i.e. how many participants have enrolled)?
Q6a. Please describe what measures are used to characterise participantsDemographics, neuropsychometric test, neuroimaging, blood and CSF biomarkers, DNA
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)?Prospective cohort|Longitudinal
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 describeby definition controls are those who do not get the disease at a give,n time of analysis
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 studyData collection ongoing| Data analysis ongoing
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)Data held on computer based records
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| Access committee mechanism| International access| Access to industry| Access for pilot studies permitted| Resource has own ethics approval so usually no need for separate external ethics approval| Data are not distributed, access through our secured system
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| Living donors: cerebro-spinal fluid| Post-mortem donors: brain
Q16b. ii) In what form are tissues/samples/DNA supplied?Secondary samples: plasma| Secondary samples: DNA| Secondary samples: RNA
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: France
Diseases: Alzheimer's disease & other dementias
Years: 2016
Database Categories: N/A
Database Tags: N/A
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