Title of the register

    Young Onset Dementia

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Florence

    Name of Principal Investigator - Last name

    Pasquier

    Address of institution -Institution

    CMRR, CHRU lille

    Address of institution - Street address

    2 Avenue Oscar Lambret

    Address of institution - City

    Lille

    Address of institution - Postcode

    59000

    Country

    France

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

    Alzheimer's disease and other dementias

    Q2. In a single sentence, what is the stated aim of your register?

    To determine the diagnostic and medical and social pathways followed by young patients suffering from early onset dementia

    Q2b. What distinguishes this register from other disease registers?

    Focus on early onset, inclusion of genetics, medical and social features and pathways (of patients and carers)

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

    27

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

    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 register

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

    18

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

    until death

    Q4b. Study criteria: what are the inclusion criteria?

    Volunteer patients referred to the CNR-MAJ (Lille-Rouen-Paris Salpêtrière) for a dementia syndrome begining before age 60. (AD, FTLD, DLB, VaD)

    Q4c. Study criteria: what are the exclusion criteria?

    onset after 60,

    Q5. What is the size of the register (i.e. how many patients have been enrolled)?

    0-500 clinical cases

    Q6a. Please describe what measures are used to characterise participants

    Standardized clinical assessment,neuropsychological tests, MRI, FDG-PET, CSF in most cases, plasma DNA, brain tissue when available

    Q6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)?

    No

    If YES, please describe

    Q7a. i) Is the register of fixed duration?

    No

    Q7a. ii) Please enter the data collection start date

    01/06/2009

    Q7a. iii) Please enter the data collection end date

    Q7b. Could you provide some information about the data collection for this register?

    Data collection ongoing

    Q8. Funding of the register - How is the register funded?

    Alzheimer Plan 2008-2012, PHRC G-MAJ 2009 and Exome 2010

    Q8. Funding of the register - Is this funding expected to continue

    Q8. Funding of the register - If so, for how long (months)?

    Q9. Could you provide information about data sweeping? - How many data sweeps have taken place?

    Q9. Could you provide information about data sweeping? - When was the most recent data sweep?

    Q9. Could you provide information about data sweeping? - When is the next data sweep?

    Q9. Could you provide information about data sweeping? - How many more data sweeps are planned on current funding? e.g 0,1,2…..

    Q9. Could you provide information about data sweeping? -How many more data sweeps are planned in total (with funding and with funding yet to be secured) e.g. 0,1,2…

    Q10. Is the clinical (phenotypic) information that is held in the register from patients and other participants such as family members:

    Routinely collected as medical records

    Q11. Is there a limit on the number of studies that can be based on this set of patients?

    No

    If YES, please give details

    Q12a. Please give information on the format and availability of data stored in a database (1)

    Data summarised in database

    % Available

    100

    Q12a. Please give information on the format and availability of data stored in a database (2)

    No

    % Available

    Q12a. Please give information on the format and availability of data stored in a database (3)

    No

    % Available

    100

    Q12a. Please give information on the format and availability of data stored in a database (4)

    Database on paper

    % Available

    100

    Q12a. Please give information on the format and availability of data stored in a database (5)

    % Available

    Please specify language used

    French

    Q12b. Please give information on how data is held as individual records (1)

    Data is held as individual records

    % Available

    100

    Q12b. Please give information on how data is held as individual records (2)

    No

    % Available

    Q12b. Please give information on how data is held as individual records (3)

    Data held on computer based records

    % Available

    100

    Q12b. Please give information on how data is held as individual records (4)

    No

    % Available

    Please specify language used

    Q13a. Is data available to other groups?

    Yes

    Q13b. If data is available to other groups what is the access policy/mechanisms for access?

    Apply to PI or co-ordinator at resource|Access through collaboration with PI only|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

    Q14. What data sharing policy is specified as a condition of use?

    No policy exists

    Q15a. Are tissues/samples/DNA available to other groups?

    Yes

    Q15b. 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|saliva, urine, amniotic fluid,

    Q15b. ii) In what form are tissues/samples/DNA supplied?

    Primary Samples: Stabilised samples (frozen or fixed)|Secondary samples: plasma|Secondary samples: DNA

    Q15b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q13b above)?

    Yes

    Q16a. Is information on biological characteristics available to other groups?

    No

    Number of patients

    % of total cohort

    Q16b. If yes, is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q13b above)?

Types: Disease Registers
Member States: France
Diseases: Alzheimer's disease & other dementias
Years: 2016
Database Categories: N/A
Database Tags: N/A

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