Behavioral Neurology and Movement Disorders Unit

Title of the register
Behavioral Neurology and Movement Disorders Unit
Name of Principal Investigator

Title Prof Dr
First name Hakan
Last name Gurvit

Address of institution where award is held

Institution Istanbul Faculty of Medicine
Street Address Millet caddesi
City Istanbul
Postcode 34390 Capa

Country

  • Turkey

    • Website
    Not availbale for the Unit
    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
  • Spinocerebellar ataxia (SCA)

    • 2a. Stated aim of the cohort
    To register all patients in a systematic way, who consult the Behavioral Neurology and Movement Disorders Unit
    2b. Features distinguishing this register from other disease registers
    Nothing special
    3a. i) Number of publications that involve use of register to date
    2
    3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)

    1. Name of PI Prof Jale Yazici; Prevelance of pain in Parkinson’s disease

    Assoc Prof Hasmet Hanagasi, LRKK2 mutation analysis in Turkish PD patients

    Dr Ebba Lohmann; Genetic analysis of sporadic and familial PD in Turkish patients

    3b. Publication list/link to where data or publications are accessible (if available)
    Pain in PD is in publication, other papers are in preparation
    4a. Study criteria: age range of participants

    Age in years from: Any age except for young children

    4b. Study criteria: inclusion criteria
    This is a general registry, no strict inclusion criteria
    4c. Study criteria: exclusion criteria
    see above
    5. Size of the register (i.e. number of patients enrolled)

  • 1,001 – 5,000 clinical cases

    • 6a. Measures used to characterise participants
    Clinical and demographic features
    6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)

  • No

    • 7a. i) Is the register of fixed duration
    1
    7a. ii) Data collection start date
    01-01-2001
    7b. Stage of data collection/analysis for the register

  • Data collection ongoing

    • 8. Funding of the register

    How the register is funded No regular funds
    Is funding ongoing n.a.
    If so, for how long n.a.

    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

    12b. Data held as individual records

    Yes/No % available
    Yes

    13a. Are data available to other groups
    1
    14. Data sharing policy specified as a condition of use

  • No policy exists

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

  • Living donors: DNA

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

  • Primary samples: Supplied fresh
  • Primary Samples: Stabilised samples (frozen or fixed)

    • 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

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

    Behavioral Neurology and Movement Disorders Unit

     

     

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