Young Onset Neurodegeneration Register

Title of the register
Young Onset Neurodegeneration Register
Name of Principal Investigator

Title Professor
First name Orla
Last name Hardiman

Address of institution where award is held

Institution Trinity College
Street Address College Green
City Dublin
Postcode 2

Country

  • Ireland

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

  • Alzheimer’s disease and other dementias
  • Motor neurone diseases
  • Parkinson’s disease
  • Huntington’s disease
  • Neurodegenerative disease in general

    • 2a. Stated aim of the cohort
    A incident based study of young onset neurodegeneration in the greater Dublin area
    2b. Features distinguishing this register from other disease registers
    Population based cohort study in the under 65 age group
    3a. i) Number of publications that involve use of register to date
    0
    3c. Information (i.e. research findings) expected to be gained from the register
    Incidence and phenotype of young onset neurodegeneration in a large urban population
    4a. Study criteria: age range of participants

    Age in years from: 40
    To (‘until death’ is applicable): 64

    4b. Study criteria: inclusion criteria
    Young onset neurodegeneration
    4c. Study criteria: exclusion criteria
    Other mimic conditions
    5. Size of the register (i.e. number of patients enrolled)

  • 0 – 500 clinical cases

    • 6a. Measures used to characterise participants
    Clinical evaluation, neuropsychological assessment, neuroimaging
    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
    01-01-2011
    7a. iii) Data collection end date
    30-12-2016
    7b. Stage of data collection/analysis for the register

  • At the planning stage
  • Data collection ongoing

    • 8. Funding of the register

    How the register is funded No dedicated funding to date

    9. Data sweeping

    Number of data sweeps that have taken place N/A
    Date of the most recent data sweep N/A
    Date of next data sweep N/A
    Number of data sweeps are planned on current funding N/A
    Total number of planned data sweeps (with funding and with funding yet to be secured) N/A

    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
    Yes
    Yes
    Yes

    12b. Data held as individual records

    Yes/No % available
    Yes
    Yes
    Yes

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

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

    • 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: DNA

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

  • 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

  • Yes, for all the cohort

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

    Young Onset Neurodegeneration Register

    Disease Registers

    2011

     

     

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