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

    orla@hardiman.net; clynch@rcsi.ie

    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

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

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