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.

Data and Resources

This dataset has no data

Additional Info

Field Value
Contact points
Contact point 1
URI
Name
National Skin Registry Solutions
Email
data@national-skin-regist.ie
Identifier
Publisher
Publisher 1
URI
Name
National Skin Registry Solutions
Email
URL
Type
http://purl.org/adms/publishertype/NationalAuthority
Identifier
Creator
Homepage
Landing page
Release date January 1, 2021
Modification date September 4, 2024
Version
Version notes
Identifier NDC-0063
Frequency http://publications.europa.eu/resource/authority/frequency/ANNUAL
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.
Type
Temporal coverage
Temporal coverage 1
Start
January 1, 2021
End
October 8, 2024
Temporal resolution
Spatial coverage
Spatial coverage 1
URI
http://publications.europa.eu/resource/authority/country/IRL
Label
Ireland
Geometry
Bounding Box
Centroid
Spatial resolution in meters
Access rights http://publications.europa.eu/resource/authority/access-right/RESTRICTED
Other identifier
Theme
  1. http://publications.europa.eu/resource/authority/data-theme/HEAL
Language
  1. http://publications.europa.eu/resource/authority/language/ENG
Documentation
Conforms to
Is referenced by
Analytics
Applicable legislation
Has version
Code values
Coding system
Purpose
Health category
  1. http://health.europa.eu/ehds/category/ehr
Health theme
  1. http://health.europa.eu/theme/public-health
Legal basis
Minimum typical age 15
Maximum typical age 65
Number of records 260994
Number of records for unique individuals. 478410
Personal data
Publisher note
Publisher type
Trusted Data Holder
Population coverage
Retention period
Health data access body
Qualified relation
Provenance Activity
URI
Qualified Attribution
Quality annotations