National Haemophilia Register
National Coagulation Centre
2005
To maintain a full national electronic record for all patients with haemophilia and other related bleeding and clotting disorders in Ireland.
Central database (housed in St James’s Hospital), accessed from other centres via Citrix Virtual Private Network. This is a national register. All patients with haemophilia and related bleeding and clotting disorders are on this register.
Complete national electronic record for all patients with haemophilia and other related bleeding and clotting disorders. Interfaced to St James’s Hospital Patient Administration System/Electronic Patient Record (EPR) Networked to Our Lady’s Hospital, Crumlin, Cork University Hospital and Galway University Hospital via Citrix Virtual Private Network. Clintech is the name of the national database collecting a full patient record which can be utilised by all relevant staff providing care to patients with haemophilia and other related bleeding and clotting disorders.
Includes the following: demographics; diagnosis; allergies; test results; medical and nursing notes; prescriptions and care providers.
Medical, nursing, administration, haemovigilance, physiotherapy, dental, social work and psychology staff.
Data is collected at the point of care and retrospectively. The system was developed so that data can be entered at the point of care in the clinic; however, individual clinicians operate differently and some enter the data retrospectively. Generally, all nurses enter data at the point of care.
Not available
International Classification of Diseases and Related Health Problems, Tenth Revision (ICD-10) migrating to Systematized Nomenclature of Medicine (SNOMED).
Approximately 948 records created on average annually.
No data is published.
Networked, via Citrix and remote access via Citrix/VPN. Role-based access password controlled. There is no facility for public access. Access for researchers may be granted if approval given by St James’s Ethics Committee.
No
Food and Drug Administration (FDA) Code of Federal Regulations 21, 11 compliant (Title 21 CFR Part II) deals with the FDA guidelines on electronic records and electronic signatures (ERES). ‘Part II’, as it is commonly called, defines the criteria under which ERES are considered to be trustworthy, reliable and equivalent to paper records. GAMP compliant (Good Automated Manufacturing Practice Guide for Validation of Automated Systems in Pharmaceutical Manufacture).