Title of the register

Young Onset Neurodegeneration Register

Name of Principal Investigator
First nameOrla
Last nameHardiman
Address of institution where award is held
InstitutionTrinity College
Street AddressCollege Green
  • Ireland
  • Website


    Contact email
    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
    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


    7a. ii) Data collection start date


    7a. iii) Data collection end date


    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 fundedNo dedicated funding to date
    9. Data sweeping
    Number of data sweeps that have taken placeN/A
    Date of the most recent data sweepN/A
    Date of next data sweepN/A
    Number of data sweeps are planned on current fundingN/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
    12b. Data held as individual records
    Yes/No% available
    13a. Are data available to other groups


    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


    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


    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


      Types: Disease Registers
      Member States: N/A
      Diseases: N/A
      Years: 2011
      Database Categories: N/A
      Database Tags: N/A

      Export as PDF