Last updated on: 19/11/2018
1. Contact details
Name of data sourceSylvia Lawry Centre for Multiple Sclerosis Research Registry
Name under which the data source should be displayed in the inventory (e.g short name if one exists)Sylvia Lawry Centre for MS Research Registry
Name of organisation
1) Department/research groupSylvia Lawry Centre for Multiple Sclerosis Research
2) Organisation/affiliationThe Human Motion Institute
Administrative Contact
Title Dr
Last name Daumer
First name Martin
Address line 1Hohenlindener Str. 1
Address line 2
Address line 3
CityMunich
Postcode81677
CountryGermany
Scientific Contact
Title Dr
Last name Daumer
First name Martin
Address line 1Hohenlindener Str. 1
Address line 2
Address line 3
CityMunich
Postcode81677
CountryGermany
2. Description/category
Disease/case registry
Exposure registry
3.1 Coverage of licensed medicinal products
Licensed Medicinal Product
Comments
3.2 ATC code (5th level)
3.3 Other product dictionaries
3.4 Recording of indication for use
4. Coverage of events
Event
Dictionary
Dictionary details
Specific event
Description: Multiple Sclerosis; MS; neurological disease
No
Multiple Sclerosis (MS)
5. Year of establishment
6. Geographical origin of data
EEA/EFTA countries
Germany
7. Demographical extent of data collection
8. Age groups
17 years and under [Paediatrics]
18 to 45 years
46 to 64 years
65 years and over
9. Size of the source/catchment population
100,000
10 a. Total (cumulative) number of persons with actual data
10 b. Number of persons with active data collection in past calendar year
11. Possibility to obtain additional information on the patient
a) Clinical information from treating physician?
b) Questionnaire data from the patient?
c) Genetic information or samples?
12. Possibility of links to other sources of data
13. Written policy governing data access
Yes
14. Committee to evaluate requests for data access
Yes
15. Charge/fee for data access
Yes
Special arrangements for academic purposes:
Yes
16. Selected publications of the last 5 calendar years using data from this data source
ReferenceLink to web-publication
