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ALSrisc
Biomarkers, environmental and lifestyle risk factors for amyotrophic lateral sclerosis
https://ki.se/meb/start
[email protected]
Swedish Research Council, Karolinska Institutet, Ulla-Carin Lindqvist Foundation
Swedish Research Council, Karolinska Institutet, Ulla-Carin Lindqvist Foundation
Only through the study| Through links to medical records| Through links to other records or registers(Swedish National Health Registers)
SAS/ACCESS
Sweden
Yes
Apply to PI or co-ordinator at resource| Access Committee mechanism| Local/ regional access| Local/ regional access| Local/ regional access| Access for pilot studies permitted| Access restricted to peer-reviewed work| Applicant needs to provide separate external ethics approval
No requirement to make data publicly available
Yes
Living donors: blood| Living donors: blood derivatives| Living donors: DNA| Living donors: cerebro-spinal fluid| Living donors: other (saliva, fecal, hair, and nail samples)
Primary samples: Supplied fresh| Secondary samples: plasma| Secondary samples: DNA
Yes
No
To identify potential biomarkers as well as genetic and non-genetic risk factors for ALS
0
1-1,000
200-500
Questionnaire data, clinical medical records, and biosamples
Yes
Death
Prospective cohort| population-based case-control study
Age| Sex|
Yes
We include sibling and spouse controls
Data collection ongoing
Yes – intend to apply for funding
Data summarised in database
Yes
Biomarkers, environmental and lifestyle risk factors for amyotrophic lateral sclerosis
Motor neurone diseases
Case Control Studies
Sweden
Motor neurone diseases
2016