Irish Epidermolysis Bullosa (EB) Registry
The Irish EB registry is an observational study of the EB patient population in Ireland recently launched by NISR. It is being run at Our Lady's Children's Hospital Crumlin and St James’s Hospital, Dublin. By collecting and analysing information on people with EB in Ireland, we can better understand their health and wellbeing, and the benefits of treatments provided.
**Purpose:** The Irish Epidermolysis Bullosa (EB) Registry was established in 2020 as a subcommittee of the National and International Skin Registry Solutions CLG to identify, collect, record, store and analyse information relating to the prevalence and incidence of EB.
This information could be used to examine how symptoms and treatments change over time and the impact that evolving therapies have on patient and physician reported outcomes. Information on EB could be provided to governmental agencies, heal
**Coverage:** Geographic: This registry is currently running from Crumlin Children’s Hospital and St James Hospital.
Temporal: Data collection commenced March 2021 and is ongoing.
Tags
- Organization
- National Skin Registry Solutions
- License
- Creative Commons Attribution Share-Alike
Metadata
| Field | Value |
|---|---|
| Access Rights | http://publications.europa.eu/resource/authority/access-right/RESTRICTED |
| Frequency | http://publications.europa.eu/resource/authority/frequency/ANNUAL |
| Id | b7c44faa-2666-412e-adc4-0a121d32b80b |
| Identifier | NDC-0063 |
| Isopen | True |
| Issued | 2021-01-01 |
| License Id | cc-by-sa |
| License Title | Creative Commons Attribution Share-Alike |
| License Url | http://www.opendefinition.org/licenses/cc-by-sa |
| Max Typical Age | 65 |
| Metadata Created | 2026-03-19T17:17:18.056030 |
| Metadata Modified | 2026-03-19T17:17:18.056033 |
| Min Typical Age | 15 |
| Modified | 2024-09-04 |
| Name | irish-epidermolysis-bullosa-eb-registry-63 |
| Notes | The Irish EB registry is an observational study of the EB patient population in Ireland recently launched by NISR. It is being run at Our Lady's Children's Hospital Crumlin and St James’s Hospital, Dublin. By collecting and analysing information on people with EB in Ireland, we can better understand their health and wellbeing, and the benefits of treatments provided. **Purpose:** The Irish Epidermolysis Bullosa (EB) Registry was established in 2020 as a subcommittee of the National and International Skin Registry Solutions CLG to identify, collect, record, store and analyse information relating to the prevalence and incidence of EB. This information could be used to examine how symptoms and treatments change over time and the impact that evolving therapies have on patient and physician reported outcomes. Information on EB could be provided to governmental agencies, heal **Coverage:** Geographic: This registry is currently running from Crumlin Children’s Hospital and St James Hospital. Temporal: Data collection commenced March 2021 and is ongoing. |
| Num Resources | 0 |
| Num Tags | 3 |
| Number Of Records | 260994 |
| Number Of Unique Individuals | 478410 |
| Private | False |
| Provenance | Enrolment in the registry is subject to a process of gaining informed explicit consent from patients diagnosed with EB/their parents or carer (if under 18). Participation is voluntary. The data is then collected from the patient’s charts after their standard clinic visits and entered onto the registry platform. Data is collected from patient medical charts and inputted into a secure internet-based computer database. Data collection is undertaken by EB registry data collectors. Data is collected on a continual basis throughout the year and EB data collectors collect data on an encounter basis. |
| Title | Irish Epidermolysis Bullosa (EB) Registry |
| Type | dataset |
No history available for this dataset.