Title of the cohort
Cohort – ALS
Acronym for cohort
Name of Principal Investigator
| Title | Adjunct Prof |
| First name | Pentti |
| Last name | Tienari |
Address of institution where award is held
| Institution | Univ Helsinki, Mol Neurol programme |
| Street Address | Haartmaninkatu 8 |
| City | Helsinki |
| Postcode | FIN-00290 |
Country
- Finland
Website
http://www.biomedicum.com/index.php?page=279&lang=2
Contact email
Funding source
Multiple
1. The cohort includes, or expects to include, incidence of the following conditions
- Motor neurone diseases
When studies on the above condition(s) are expected to become possible
- Already possible
2a. Stated aim of the cohort
Genetic analysis of Finnish ALS
2b. Features distinguishing this cohort from other population cohorts
3a. i) Number of publications that involve use of cohort to date
1
3a. ii) Up to three examples of studies to date (PI, Institution, Title of Study)
1. Name of PIPentti Tienari, Univ Helsinki, Finnish ALS-GWAS
3b. Publication list/link to where data or publications are accessible (if available)
Laaksovirta H*, Peuralinna T*, Schymick JC*, Scholz SW, Lai SL, Myllykangas L, Sulkava R, Hernandez DG, Gibbs JR, Tienari PJ*,Traynor BJ*. Chromosome 9p21 in amyotrophic lateral sclerosis in Finland: a genome-wide association study.. Lancet Neurol 2010; Oct;9(10):978-85.
3c. Information (i.e. research findings) expected to be gained from the population cohort
4a. Study criteria: age range of participants at recruitment
| Age in years from: | 30 |
| To (‘until death’ if applicable): | until death |
4b. Study criteria: inclusion criteria
Diagnosis of motor neuron disease
4c. Study criteria: exclusion criteria
Unwilling to participate
5. Size of the cohort (i.e. number of participants enrolled)
- 1,000 – 5,000 participants
6a. Measures used to characterise participants
GWAS data, exome sequencing of a few individuals, clinical characteristics.
6b. Additional measures for participants with a clinical disorder
6c. Are there defined primary and secondary endpoints (e.g. defined health parameters)
- No
7. Study design
- Retrospective cohort
8. Cases matched by
- Other health assessment (specify) / N/A
- ALS diagnosis
9a. Does the study include a specialised subset of control participants
- Yes
9b. If yes, description of specialised subset of control participants
Population controls, non-ALS..
10a. i) Data collection start date
01-01-1995
10a. ii) Data collection end date
31-12-2015
10a iii) Data collection for this study is
- Data analysis ongoing
10b. Plans to continue the cohort study beyond the current projected end date
- Yes – intend to apply for funding
11. Data collected
- Through links to medical records
12. System in place to enable re-contact with patients for future studies
- No
13a. Format and availability of data stored in a database
| Yes/No | % available | |
| Data summarised in database | ||
| Database is web-based | ||
| Database on spreadsheet | yes | 100 |
| Database is on paper | ||
| Other (specify) |
Language used:
Finnish
13b. Format and availability of data held as individual records
Language used:
Finnish
13b. Format and availability of data held as individual records
| Yes/No | % available | |
| Data held as individual records | ||
| Data is web-based | ||
| Data held on computer based records | Yes | 100 |
| Data held on cards | ||
| Other (specify) |
Language used:
Finnish
14a. Are data available to other groups
No
14b. Access policy/mechanisms for access if data are available to other groups
15. Data sharing policy specified as a condition of use
- Data made publicly available after a specified time point
16a. Are tissues/samples/DNA available to other groups
Yes
16b. i) Description of available tissues/samples/DNA
- Living donors:blood
- Living donors: DNA
- Living donors: other, please specify below
- Post-mortem donors: brain
- Post-mortem donors: spinal cord
16b. ii) Form available tissues/samples/DNA are supplied in
- Primary Samples: Stabilised samples (frozen or fixed)
- Secondary samples: DNA
- Secondary samples: RNA
- Secondary samples: protein extracts
- Secondary samples: cell lines derived from primary samples
16b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data
17. Is information on biological characteristics available to other groups
- If available for a subset please specify number of patients and % of total cohort
- 1%