ALS quality register

ALS quality register

http://www.neuroreg.se/sv.html/motorneuronsjukdom
[email protected]

Swedish

Sweden

Questionnaire data, clinical findings, neurophysiological findings, imaging, laboratory tests, funtional scales

Motor neurone diseases

No requirement to make data publicly available

Apply to PI or co-ordinator at resource|National access|Resource has own ethics approval so usually no need for separate external ethics approval
Yes
Swedish

Data held on computer based records
Data is web-based
Data is held as individual records
No

No
Database is web-based
Database is web-based
Data summarised in database

No

Data collection ongoing|Data analysis ongoing

No
death
Yes

We aim to understand the demographic differences when examening a whole nations ALS-population. Establish a Swedish phenotype. Identify specific traits and use of non medical drugs.

501-1000 clinical cases

national data, high coverage, longitudinal follow up

ALS quality register

Disease Registers
Sweden
Motor neurone diseases
2016