Irish Epidermolysis Bullosa (EB) Registry
National and International Skin Registry Solutions (NISR) CLG.
2021
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, health care providers and payers, and help improve planning and delivery of care and services for people with EB. It will also provide an important source of information for future research and advocacy.
Key aspects of the registry:
- It incorporates best international practice in international registries
- It is a not-for-profit initiative
- The dataset is based on open source code and will be available to all, facilitating interoperability across platforms
- The data model is patient-centred and workflows are clinician-centred
- Registry experts, clinicians and patients guided the develop of the registry
- The registry has the potential to be expanded and further developed to support EB clinical care
- The registry is GDPR compliant and has been approved by the hospital ethics committees where data is collected from
- Through broadscale participation and collaboration, we will be able to answer pressing questions for our EB patients and their caregivers.
Geographic: This registry is currently running from Crumlin Children’s Hospital and St James Hospital.
Temporal: Data collection commenced March 2021 and is ongoing.
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.
Key users of this data collection include; clinical teams, government agencies, health boards, hospitals, health care professionals, approved researchers, policy makers (e.g., EMA) and the HSE.
EB Registry collects data relating to demographics and diagnosis of patients at baseline and their health status at each hospital visit, (e.g. height, weight, blood test results, procedures, treatments, health complications, healthcare service use and information about how the condition and treatments impact patients’ quality of life).
A list of collected variables is available upon request.
There is no national-level identifier however each patient enrolled is assigned their own unique registry I.D.
The EB dataset collects data relating to sex, country of birth, educational level and ethnicity.
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.
N/A, this system does not use coding.
We do not yet have that data.
This data will be published annually via annual reports.
Summary data is published in the Annual Report. EB consultant/team can request read only access to their centre’s patient data. Researchers can request access to de-identified data by submitting an Irish EB Data Application Form.
Each application is reviewed by the Irish EB Scientific Committee and must be approved prior to the release of any data.
Please direct any emails to: ebregistry@nisrsolutions.com
No.
The registry is accessible to permitted users only through secure internet access.