Patient registries are extraordinarily valuable in research and are therefore a focus for many of our member organisations.
Patient registries have the ability to:
- Capture disease demographics, clinical outcomes and survival rates
- Support patient recruitment for clinical research
- Support the undertaking of research studies and clinical trials
- Facilitate pharmacovigilance
- Offer patients access to their own data, through patient portals
- Allow patients to submit their own data e.g. quality of life data or patient reported outcomes
Despite their importance however, in too many cases, registries remain a thing of the future. The challenges to developing registries are large but getting less, as technology develops and expertise is shared. We support members in their registry activities and highlight their importance at a national level. We frequently participate in national and international conversations about patient registries.
As practical and simple guidance on registry development is still very limited, we produced Developing a Patient Registry: A Practical Guide which provides useful advice on starting and maintaining patient registries and offers a vision for the future of patient registries in Ireland.
Note that this guide was developed under our former name – the Medical Research Charities Group.