Irish ALS Register

Title of the register
Irish ALS 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.mnd.ie
    Contact email
    [email protected]; [email protected]
    1. Conditions included, or expected to be included, in the disease register

  • Motor neurone diseases

    • 2a. Stated aim of the cohort
    Characterisation of demographics, phenotype, natural history; survival of ALS in Ireland
    2b. Features distinguishing this register from other disease registers
    Population based, includes nested case controlled studies
    3a. i) Number of publications that involve use of register to date
    70
    3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)

    1. Name of PI 1. Incidence ; prevalence of ALS
    2. Case control study of cognitive function in ALS
    3. WGAS in ALS

    3b. Publication list/link to where data or publications are accessible (if available)
    www.mnd.ie
    4a. Study criteria: age range of participants

    Age in years from: 18
    To (‘until death’ is applicable): Death

    4b. Study criteria: inclusion criteria
    Possible, probable, definite ALS
    4c. Study criteria: exclusion criteria
    Conditions other than ALS
    5. Size of the register (i.e. number of patients enrolled)

  • 1,001 – 5,000 clinical cases

    • 6a. Measures used to characterise participants
    Clinical examination
    Chart review
    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
    01-01-1995
    7a. iii) Data collection end date
    01-01-2024
    7b. Stage of data collection/analysis for the register

  • Data collection ongoing
  • Data analysis ongoing

    • 8. Funding of the register

    How the register is funded Health Research Board, Framework 7, Research Motor Neuron
    Is funding ongoing Health Research Board grant expires in 2012

    9. Data sweeping

    Number of data sweeps that have taken place 10
    Date of the most recent data sweep Jan 2011
    Date of next data sweep July 2011
    Number of data sweeps are planned on current funding 3
    Total number of planned data sweeps (with funding and with funding yet to be secured) 6

    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 80
    no
    yes 30
    yes 100

    12b. Data held as individual records

    Yes/No % available
    yes
    no
    yes
    no

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

  • 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

    Irish ALS Register

    Disease Registers

    2011

     

     

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