The National Registry of Skin Disease (NRSD) project was established in 2012 through collaboration between the Irish Skin Foundation and the Charles Institute to establish whether such a Registry might be of benefit in Ireland and, if so, how it might best be established.
Disease registries, also referred to as patient registries, are increasingly viewed as a means of providing accurate health information to enable the delivery of effective health care.
This project aims to deliver a national registry that can meet these demands in a genuinely patient-centred manner. This will be challenging: dermatology covers a vast number of conditions and is under resourced in Ireland, where medical records remain predominantly paper based.
To advise how a registry will meet these challenges a Registry Advisory Board and a research fellow, Dr Dmitri Wall, who is a trainee dermatologist, has been appointed by the ISF to work on this project over a two-year period, during which he is studying for his Masters in Health Informatics at TCD.
An expert Advisory Board has been appointed with Professor Alan Irvine, Professor of Dermatology at Trinity College and Our Lady’s Children’s Hospital Crumlin, as Chairman, and a membership composed of Professor Eoin O’Brien (Irish Skin Foundation); Mr Peter Lennon (Department of Health); Dr Howard Johnson and Dr Barry White (Health Service Executive); Professor Desmond Fitzgerald, (University College Dublin); Ms Eibhlín Mulroe, (IPPOSI); Dr Harry Comber, (National Cancer Registry); Professor Jane Grimson, (Health Information and Quality Authority); Professor Neil O’Hare, (National Integrated Medical Imaging System – NIMIS); Professor Brian Caulfield and Ms Nicola Mountford (Applied Research for Connected Health – ARCH); Professor Barry Smyth and Professor Tahar Kechadi (Insight Centre for Data Analytics); Mr Godfrey Fletcher, (Cystic Fibrosis Registry of Ireland).
This group has provided considerable experience relating to the establishment of a registry, skin health, health informatics, data analytics, connected health and the Irish healthcare and regulation area.
The Registry will concentrate initially on three areas:
Ensuring that the patient is a central figure in the registry has meant that issues around informed consent, data protection and the secondary use of information are prominent considerations. By creating a registry that is embedded in clinical practice and developed to personalise a patient’s experience, the registry will deliver immediate and tangible benefits to people with skin conditions. It is expected that this will enable patients to make better use of their data and become more involved in the delivery of their own health care.