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

    hasmet@yahoo.com

    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

    Types: N/A
    Member States: N/A
    Diseases: N/A
    Years: N/A
    Database Categories: N/A
    Database Tags: N/A

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