Title of the register


Irish ALS Register

Name of Principal Investigator - Title


Prof

Name of Principal Investigator - First name


Orla

Name of Principal Investigator - Last name


Hardiman

Address of institution -Institution


Trinity College Dublin

Address of institution - Street address


College Green

Address of institution - City


Dublin

Address of institution - Postcode


Country


Ireland

Website


Contact email


[email protected]

Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?


Motor neurone diseases

Q2. In a single sentence, what is the stated aim of your register?


Characterization of epidemiologic, clinic and genetic features of ALS in a population based Register

Q2b. What distinguishes this register from other disease registers?


Population based- longest running ALS Register in the world

Q3a. i) Number of publications that involve use of your register to date


>200

Q3a. ii) Please give up to three examples of studies to date (PI, Institution, Title of Study)


Hardiman et al Family aggregation of neuropsychiatric disease in ALS Kindreds|Hardiman, McLAughlin, Bradley: Popuation genomics of ALS|Hardiman , Pender: Cognitive subphenotypes in ALS

Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available?


orcid

Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the register


Q4a. Study criteria: what is the age range of participants? Age in years: from


18

Q4a. Study criteria: what is the age range of participants? Age in years: to


until death

Q4b. Study criteria: what are the inclusion criteria?


ALS

Q4c. Study criteria: what are the exclusion criteria?


Not ALS

Q5. What is the size of the register (i.e. how many patients have been enrolled)?


1001-5000 clinical cases

Q6a. Please describe what measures are used to characterise participants


Clinical Characterization, EMG,

Q6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)?


No

If YES, please describe


Q7a. i) Is the register of fixed duration?


No

Q7a. ii) Please enter the data collection start date


01/01/1994

Q7a. iii) Please enter the data collection end date


Indefinite

Q7b. Could you provide some information about the data collection for this register?


Data collection ongoing|Data analysis ongoing

Q8. Funding of the register - How is the register funded?


Grants

Q8. Funding of the register - Is this funding expected to continue


Yes

Q8. Funding of the register - If so, for how long (months)?


Indefinite

Q9. Could you provide information about data sweeping? - How many data sweeps have taken place?


Q9. Could you provide information about data sweeping? - When was the most recent data sweep?


Q9. Could you provide information about data sweeping? - When is the next data sweep?


Q9. Could you provide information about data sweeping? - How many more data sweeps are planned on current funding? e.g 0,1,2…..


Q9. Could you provide information about data sweeping? -How many more data sweeps are planned in total (with funding and with funding yet to be secured) e.g. 0,1,2…


Q10. Is the clinical (phenotypic) information that is held in the register from patients and other participants such as family members:


Routinely collected as medical records

Q11. Is there a limit on the number of studies that can be based on this set of patients?


If YES, please give details


Q12a. Please give information on the format and availability of data stored in a database (1)


Data summarised in database

% Available


Q12a. Please give information on the format and availability of data stored in a database (2)


No

% Available


Q12a. Please give information on the format and availability of data stored in a database (3)


No

% Available


Q12a. Please give information on the format and availability of data stored in a database (4)


% Available


Q12a. Please give information on the format and availability of data stored in a database (5)


University Computer Mainframe

% Available


Please specify language used


English

Q12b. Please give information on how data is held as individual records (1)


Data is held as individual records

% Available


Q12b. Please give information on how data is held as individual records (2)


No

% Available


Q12b. Please give information on how data is held as individual records (3)


Data held on computer based records

% Available


Q12b. Please give information on how data is held as individual records (4)


No

% Available


Please specify language used


Q13a. Is data available to other groups?


Q13b. If data is available to other groups what is the access policy/mechanisms for access?


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

Q14. What data sharing policy is specified as a condition of use?


No requirement to make data publicly available

Q15a. Are tissues/samples/DNA available to other groups?


No

Q15b. i) If yes, please describe below:


Q15b. ii) In what form are tissues/samples/DNA supplied?


Q15b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q13b above)?


Q16a. Is information on biological characteristics available to other groups?


No

Number of patients


% of total cohort


Q16b. If yes, is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q13b above)?

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