National Haemophilia Register
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.
**Purpose:** To maintain a national electronic record for all people with haemophilia and other related bleeding disorders in Ireland.
**Coverage:** 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.
Tags
Metadata
| Field | Value |
|---|---|
| Access Rights | http://publications.europa.eu/resource/authority/access-right/RESTRICTED |
| Frequency | http://publications.europa.eu/resource/authority/frequency/MONTHLY |
| Id | a0d7a3fd-a93d-4a41-88e1-847f6f171b8c |
| Identifier | NDC-0087 |
| Isopen | True |
| Issued | 2005-01-01 |
| License Id | cc-zero |
| License Title | Creative Commons CCZero |
| License Url | http://www.opendefinition.org/licenses/cc-zero |
| Max Typical Age | 75 |
| Metadata Created | 2026-03-19T17:17:08.255567 |
| Metadata Modified | 2026-03-19T17:17:08.255571 |
| Min Typical Age | 0 |
| Modified | 2023-10-03 |
| Name | national-haemophilia-register-87 |
| Notes | 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. **Purpose:** To maintain a national electronic record for all people with haemophilia and other related bleeding disorders in Ireland. **Coverage:** 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. |
| Num Resources | 0 |
| Num Tags | 4 |
| Number Of Records | 1037929 |
| Number Of Unique Individuals | 498407 |
| Private | False |
| Provenance | Data is collected at the point of care in a continuous manner by designated health care staff. |
| Title | National Haemophilia Register |
| Type | dataset |
No history available for this dataset.