Last updated on: 09/06/2018
1. Contact details
Name of data sourceInternational Severe Asthma Registry
Name under which the data source should be displayed in the inventory (e.g short name if one exists)ISAR
Name of organisation
1) Department/research group
2) Organisation/affiliationOptimum Patient Care
Administrative Contact
Title Professor
Last name Price
First name David
Address line 15 Coles Lane
Address line 2
Address line 3
CityOakington, Cambridge
PostcodeCB24 3BA
CountryUnited Kingdom
Scientific Contact
Title Professor
Last name Price
First name David
Address line 15 Coles Lane
Address line 2
Address line 3
CityOakington, Cambridge
PostcodeCB24 3BA
CountryUnited Kingdom
2. Description/category
Disease/case registry
3.1 Coverage of licensed medicinal products
Licensed Medicinal Product
Comments
None
3.2 ATC code (5th level)
No
3.3 Other product dictionaries
No
3.4 Recording of indication for use
No
4. Coverage of events
Event
Dictionary
Dictionary details
Diagnosis in primary care
No
Specialist diagnosis
No
Laboratory values
No
5. Year of establishment
2017
6. Geographical origin of data
EEA/EFTA countries
Bulgaria
Denmark
Estonia
Finland
France
Germany
Greece
Iceland
Ireland
Italy
Netherlands
Norway
Spain
Sweden
United Kingdom
Non EEA/EFTA areas
Asia
North America
Australia & Oceania
7. Demographical extent of data collection
Regional sub-set :
The data is procured from different centres in a region or a country, namely the severe asthma clinics.
8. Age groups
18 to 45 years
46 to 64 years
65 years and over
65 to 75 years
76 years and over
9. Size of the source/catchment population
10,000
10 a. Total (cumulative) number of persons with actual data
2,299
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?
Yes
b) Questionnaire data from the patient?
Yes
c) Genetic information or samples?
No
12. Possibility of links to other sources of data
Yes :
ISAR is using an electronic data capture system (EDC) that builds an anonymized database of severe asthma patients. ISAR data can be potentially linked into the EMR databases in some of the participating countries.
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
