Last updated on: 23/04/2019
1. Contact details
Name of data sourceAdvancing the Patient Experience in COPD Registry
Name under which the data source should be displayed in the inventory (e.g short name if one exists)APEX COPD Registry
Name of organisation
1) Department/research group
2) Organisation/affiliationOptimum Patient Care
Administrative Contact
Title Dr
Last name Edwards
First name Chelsea
Address line 15 Coles Lane
Address line 2
Address line 3
CityCambridge
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
CityCambridge
PostcodeCB24 3BA
CountryUnited Kingdom
2. Description/category
Disease/case registry
Routine primary care electronic patient registry
Prospective studies database
Retrospective studies database
3.1 Coverage of licensed medicinal products
Licensed Medicinal Product
Comments
Hospital data
Community / general practice data
Vaccines
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
Adverse events (for pharmacovigilance databases)
No
Symptoms/signs
No
Diagnosis in primary care
No
Specialist diagnosis
No
Laboratory values
No
Procedures
No
5. Year of establishment
2019
6. Geographical origin of data
Non EEA/EFTA areas
North America
7. Demographical extent of data collection
Regional sub-set :
The data is procured primarily from primary care sites in a subset of North American states (Colorado, Texas, North Carolina, New York, Ohio, Tennessee and Virginia)
8. Age groups
18 to 45 years
46 to 64 years
65 years and over
9. Size of the source/catchment population
75,000
10 a. Total (cumulative) number of persons with actual data
0
10 b. Number of persons with active data collection in past calendar year
0
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 :
APEX COPD Registry is primarily derived from patient electronic medical records supplemented with patient reported information and outcomes. This data has the potential to be integrated with other electronic data sources including claims 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
