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
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