Last updated on: 09/07/2019
1. Contact details
Name of data sourceDutch Haemophilia Registry
Name under which the data source should be displayed in the inventory (e.g short name if one exists)HemoNED - Haemophilia
Name of organisation
1) Department/research group
2) Organisation/affiliationHemoNED Foundation
Administrative Contact
Title Dr
Last name Goedhart
First name Geertje
Address line 1Leiden University Medical Center
Address line 2Staff Thrombosis and Hemostasis C7-Q
Address line 3PO Box 9600
CityLeiden
Postcode2300 RC
CountryNetherlands
Scientific Contact
Title Dr
Last name Van der Meer
First name FJM
Address line 1Leiden University Medical Center
Address line 2Staff Thrombosis and Hemostasis C7-Q
Address line 3PO Box 9600
CityLeiden
Postcode2300 RC
CountryNetherlands
2. Description/category
Disease/case registry
3.1 Coverage of licensed medicinal products
Licensed Medicinal Product
Comments
Hospital data
Coagulation factors
Community / general practice data
Coagulation factors
3.2 ATC code (5th level)
No
3.3 Other product dictionaries
No
3.4 Recording of indication for use
Yes
Is a coding dictionary being used?
No
4. Coverage of events
Event
Dictionary
Dictionary details
Adverse events (for pharmacovigilance databases)
No
SAE serious adverse events
Specialist diagnosis
No
Laboratory values
No
Death
No
Specific event
Description: Haemophilia, hemophilia, bleeding disorder Factor VIII deficiency, Factor IX, Factor X, Clotting factors
No
Blood disorder
5. Year of establishment
2017
6. Geographical origin of data
EEA/EFTA countries
Netherlands
7. Demographical extent of data collection
Nation-wide
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
17,000,000
10 a. Total (cumulative) number of persons with actual data
1,550
10 b. Number of persons with active data collection in past calendar year
1,084
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 :
Linkage to diagnostic and treatment variables, no linkage on individual level possible.
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:
No
16. Selected publications of the last 5 calendar years using data from this data source
ReferenceLink to web-publication
