NISR & Our Services
NISR builds and maintains skin registries in Ireland and globally. To protect patient data and enhance understanding of skin conditions through ethical, secure and responsible information collection.
What is a registry?
“An organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition or exposure, and that serves one or more predetermined scientific, clinical or policy purposes.”
Gliklich et al. Registries for Evaluating Patient Outcomes: A User’s Guide. Agency for Healthcare and Research Quality publication 2014.
NISR is currently managing 3 registries, the Irish Epidermolysis Bullosa Registry, the Irish arm of the UK-Irish Atopic Eczema Systemic Therapy Registry and an Alopecia Registry GRASS Ireland. A database of information which includes clinical details regarding maintenance and treatment of patients with a particular dermatological disease is extremely useful in improving the overall condition of patients and promoting research and publication in that disease area. By gathering relevant information regarding diagnosis and treatment of a specific patient population into one central repository, it is easier to devise best practice strategies and guidelines; and at the same time, monitor clinical management regimes.
Overall, NISR is an important resource for both clinicians and researchers. By providing a centralized repository of data and reliable information, as well as an avenue for collaboration, NISR can be an invaluable tool in improving the management of dermatological disorders.
Broadly, these are the objectives of our registries:
- To capture the demographics of the dermatological condition and report on this annually
- To support advocacy for the patients
- To promote patient involvement in research
- To better understand the needs of patients and those caring for them
- To bring the experience of patients, experts and outcomes of research together to make best practice more accessible to all
- To identify unmet needs and adverse events during treatments and therapies
High-quality dermatology patient registries require considerable time to develop and produce meaningful data. Development time is influenced by registry complexity and regulatory hurdles that vary significantly nationally and institutionally. Our focus is on the dermatology community and the people they care for, to support them to adopt a more cohesive approach to patient registry development and data sharing that can lead to a myriad of benefits. These include improved utilisation of limited resources, increased data interoperability, improved ability to rapidly collect meaningful data, and shortened response times to generate real-world evidence. NISR works to support the development of an international federation of patient registries to consolidate and operationalise the lessons learned by the dermatology community. (Wall et al. Clin. Dermatol. 2021)
We believe rare diseases in particular can benefit by cooperation and data harmonisation with our international colleagues. Conditions which have smaller numbers need support to combine their data with that of other countries to increase the power of their data. We believe this federation would provide an enduring means of applying international knowledge to the maintenance and development of sustainable, coherent and impactful patient registries of benefit now and in the future
Advisory Services
Advisory Services provided by NISR to support registry planning, development and maintenance:
- Consultation on registry design and data harmonisation
- A standard dataset to begin a skin registry
- Data protection and GDPR experience
- Advice on patient and public involvement (PPI)
- Support for ethical applications to research ethics committees
- Templates for associated documentation, consent forms etc.
- Identifying opportunities to pool data across conditions
- Resources for promotion of registries and an international network
1. Design
2. Approve
3. Recruit
Registry
Structure of NISR
Board of Directors
NISR is governed by an expert Board of Directors, and each individual registry has it’s own separate Executive Committee.
Prof Alan Irvine
Chairman
Dr Fiona Browne
Board Member
Prof Des Tobin
Board Member
Dr Avril Kennan
Board Member
Mr Michael Brady
Board Member
NISR Staff
Mr Godfrey Fletcher
CEO
Dr Dmitri Wall
Data Controller/Health Informatician
and Consultant
Dr Lara Cutlar
Registry Co-ordinator
Ms Pearl Olesitse
Clinical Research Associate
Governance
- NISR is currently submitting their application to be compliant with The Governance Code, a Code of Practice for Good Governance of Community, Voluntary and Charitable Organisations in Ireland: www.governancecode.ie
- We produce annual reports that review the years achievements and include our audited accounts.
- We are currently working to be compliant with the Charities Act 2009, the Companies Act 2014 and the Lobbying Act 2015.
- Our constitution is public along with all of our committee Terms of Reference.
Annual Reports:
- Annual Report 2020
- Annual Report 2019
- Annual Report 2018
Audited Accounts:
- Accounts Report 2020
- Accounts Report 2019
- Accounts Report 2018
Overview of Our Constitutional Objectives
Principal Objectives of NISR
The principal objects for which the CLG are established are to provide for the relief of sickness, disease and human suffering for Irish and international patients suffering from skin diseases and to advance education by:
- Promoting, protecting and assisting research into skin conditions;
- Developing and deploying specialist registry technologies that record patient consented clinical data in a secure, trusted environment for use in approved research projects;
- Providing advocacy data for patient groups, confirming accurate demographics of each skin disease and identifying patients for clinical trials; and reporting on outcomes of various patient and treatment groups.
Subsidiary and Ancillary Objectives
- To identify, record, analyse, and store information relating to the prevalence, incidence, and treatment of existing and newly diagnosed skin conditions;
- To register all persons with skin conditions;
- To provide data on long term prognosis for patients with skin conditions and to compare this information with international data;
- To compare management and treatment of skin conditions within the State and with best international practice standards;
- To ensure that all information is complete, accurate, timely and confidential; in order to effectively use the data collected;
- To develop and improve both general registry, and specifically skin condition registry, methodology and technology;
- To promote and facilitate the use of clinical data in approved research projects;
- To initiate research into the causes, distribution, treatment and outcome of patients with skin conditions and to participate in similar research initiated by others; and to publish the findings;
- To assist in the evaluation of novel treatments and screening programmes;
- To assist in the planning and management of health services and essential resources for persons with skin conditions;
- To publish an annual report based on the activities of the Company;
- To provide high quality reports for clinicians, the HSE, hospitals and key stakeholders;
- To provide specially requested reports for clinicians, the HSE, and hospitals;
- To provide individual consultants with trends and updated information in respect of their patient population;
- To provide facilities and other resources and to help maintain and finance such facilities and other resources as are conducive to the pursuit of the principal objects of the Company; and
- To provide such services connected with the principal objects of the Company as are considered to be of assistance and benefit in furthering the principal objects of the Company.
Funding
NISR is a not-for-profit organization and registered charity (RCN 20205667) established with charitable funding from the City of Dublin Skin and Cancer Hospital Charity (https://www.cdschc.ie).
We do not collect data to generate a profit for NISR, our Board of Directors do not receive any financial benefit from volunteering to work for NISR.