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Amyotrophic Lateral Sclerosis Online Genetics Database (ALSOD )
Swedish and English
Sweden
standard clinical EFNS criteria plus genetic screening criteria
Motor neurone diseases|Prion disease
Secondary samples: plasma|Secondary samples: DNA|Secondary samples: protein extracts|Secondary samples: cell lines derived from primary samples
Secondary samples: plasma|Secondary samples: DNA|Secondary samples: protein extracts|Secondary samples: cell lines derived from primary samples
Yes
No policy exists
No
Swedish and English
Data held on computer based records
No
Data is held as individual records
No
No
If available for a subset please specify number of patients and % of total cohort
Yes
No
Database on paper
No
No
Data summarised in database
the limit is what is permitted by the consent from the patients/relatives enrolled and the Ethical Review Board
Yes
Data collection ongoing|Data analysis ongoing
01/10/1992
No
No
please see web of science, PubMed. Search terms are my name and prof. Stefan L. Marklund
More than 10,000 clinical cases
>180
it is unique designed to fit the needs of the ALS research group at UmU
register of patients with any type of ALS/prion disease that has donated a blood sample to our molecular and genetic studies into the causes of ALS
Amyotrophic Lateral Sclerosis Online Genetics Database (ALSOD )
Disease Registers
Sweden
Motor neurone diseases|Prion disease
2016