Turkuaz Alzheimer’s Working Group Register

Title of the register
Turkuaz Alzheimer’s Working Group Register
Name of Principal Investigator

Title MD, PhD
First name
Last name Yener

Address of institution where award is held

Institution
Street Address Mithatpasa Cad.
City Izmir
Postcode 35340

Country

  • Turkey

    • Website
    www.epikriz.com
    Contact email
    [email protected]
    1. Conditions included, or expected to be included, in the disease register

  • Alzheimer’s disease and other dementias
  • Parkinson’s disease
  • Neurodegenerative disease in general

    • 2a. Stated aim of the cohort
    To pool the patients’ data across Turkey when needed for a clinical dementia study
    2b. Features distinguishing this register from other disease registers
    It is the first and the only web-based dementia registry in Turkey, as far as we know.
    3a. i) Number of publications that involve use of register to date
    3
    3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)

    1. Name of PI

    4a. Study criteria: age range of participants

    Age in years from: 40+

    4b. Study criteria: inclusion criteria
    applying to memory clinics nationwide
    4c. Study criteria: exclusion criteria
    None
    5. Size of the register (i.e. number of patients enrolled)

  • 1,001 – 5,000 clinical cases

    • 6a. Measures used to characterise participants
    To apply or to be referred to dementia outpatient clinics
    6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)

  • No

    • 7a. i) Is the register of fixed duration
    2
    7a. ii) Data collection start date
    01-09-2006
    7a. iii) Data collection end date
    01-04-2011
    7b. Stage of data collection/analysis for the register

  • Data collection ongoing

    • 8. Funding of the register

    How the register is funded Between 01-06-2006 and 01-04-2011 a drug company Sanovel funded this registry
    Is funding ongoing We are applying to Turkish Neurological Society
    If so, for how long 36 months

    10.The clinical (phenotypic) information held in the register from patients and other participants such as family members is

  • Routinely collected as medical records

    • 11. Limit on the number of studies that can be based on this set of patients

  • No

    • 12a. Data stored in a database

    Yes/No % available
    yes 100
    yes 100
    yes when needed
    yes 50

    12b. Data held as individual records

    Yes/No % available
    yes 100
    yes 100
    yes 50
    0 0

    13a. Are data available to other groups
    2
    13b. Access policy/mechanisms for access if data are available to other groups

  • Resource has own ethics approval so usually no need for separate external ethics approval

    • 14. Data sharing policy specified as a condition of use

  • No requirement to make data publicly available

    • 15a. Are tissues/samples/DNA available to other groups
    2
    15b. i) Description of available tissues/samples/DNA

  • Living donors:blood
  • Living donors: blood derivatives
  • Living donors: DNA

    • 15b. ii) Form available tissues/samples/DNA are supplied in

  • Primary samples: Supplied fresh
  • Primary Samples: Stabilised samples (frozen or fixed)
  • Secondary samples: derivatives of primary samples
  • Secondary samples: plasma
  • Secondary samples: DNA

    • 15b iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data
    2
    16a. Is information on biological characteristics available to other group

  • No

    • 16b. Is the access policy/mechanism for obtaining details of the characteristics the same as that for obtaining other data
    2

    Turkuaz Alzheimer’s Working Group Register

    Disease Registers

    2011

     

     

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