National Haemophilia Register
National Coagulation Centre (NCC),
St. James’s Hospital,
James’s Street,
Dublin 8.
2005 (May).
To maintain a national electronic record for all people with haemophilia and other related bleeding disorders in Ireland.
This is a National Register and includes three Comprehensive Care Centres and one Haemophilia Treatment Centre. Data collections stats from 2005 but may include earlier dates if uploaded. There is no finish date as data collection is on-going.
Cloud based National electronic record for all people with haemophilia and other related bleeding disorders. Interfaced to St James’s Hospital Patient Administration System/EPR (St James’s Hospitals electronic patient record). Also accessed by Children’s Health Ireland at Crumlin, Cork University Hospital and Galway University Hospital. The data collection operates as an individual electronic health record but is also searchable as a National Register for Haemophilia and related bleeding disorders.
Healthcare professionals and administrative staff in all three Comprehensive Care Centres and one Haemophilia Treatment Centre in Ireland.
Includes the following: demographics; diagnosis; allergies; test results; medical and nursing notes; prescriptions; Laboratory investigation; outcomes and care providers.
Not available.
Not at present.
Yes, race, gender, religion.
Data is collected at the point of care in a continuous manner by designated health care staff.
SNOMED-CT.
The average number of records created annually is not available at this time.
There are approximately 20160 active and closed records on the system.
Annual report to the World Federation of Haemophilia. Intermittent reports for research studies approved by the Research and Ethics Committee.
Cloud based system accessed via URL. https://nhl.indici.ie/Login/Login Role based access for healthcare staff which is password controlled along with full audit trail. There is no facility for public access. Access for researchers may be granted if approval given by St James’s Ethics Committee and local approval as per Access Request Policy.
No.