Patient registries have evolved from static repositories of patient data to now have the potential to be extraordinarily valuable tools that can span research and care and support all types of research. Patient registries can integrate seamlessly with clinical management systems, with electronic health records and with patient portals.

Modern registries can be built upon over time to allow data for research studies to be captured and seamlessly integrated with patient data which already exists. Excellent examples demonstrating such seamless integration and the value of registries include the Cystic Fibrosis Registry of Ireland and the National Registry of Skin Disease (NRSD).

Patient registries can:

• Capture disease demographics, clinical outcomes and survival rates
• Support patient recruitment for clinical research
• Support the undertaking of research studies and clinical trials
• Support pharmacovigilance
• Allow 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

F or all these reasons, patient organisations recognise the great need for patient registries and many already support registries or have plans to do so. The MRCG is working to support members in their registry activities and to highlight their importance at a national level.