National Registry
The primary aim of this registry is to improve the quality of care and survival of patients with Fanconi Anaemia (FA) in the UK and Ireland. Such a registry will ensure collection of data to allow measurement of both clinical outcome and process measures permitting comparison of provision of care over time nationally, among different centres within the UK, and also with centres outside the UK. Specifically, the UK & Ireland Fanconi Anaemia Registry will determine through an ongoing patient-based clinical audit to what extent the management of individual/families affected by FA will be meeting benchmarks of management to be set out in a Fanconi Anaemia Standards of Care document currently in preparation by the UK FA Clinical Network.
- Maintaining a contact list for FA affected families and their clinicians to ensure rapid dissemination of information relevant to the care of FA-affected individuals, e.g., to circulate new developments or to offer participation in clinical trials.Providing a tool for clinical and translational research into FA to ultimately benefit individuals affected by FA.
- Determining risk-adjusted outcomes for individuals in the UK and Ireland affected by FA.
- Generating information concerning service needs of FA affected individuals and their families to ensure appropriate funding and service development within the NHS environment.
Registry Progress
- A solution to the provision of the Registry is still being sought
- Provisional terms of reference and a minimum dataset have been established. The UK Ireland Fanconi Anaemia Registry Consultation Document 11/10/08 T Carroll.
- The Specialised Healthcare Aliance has also recently published a Registries Guide (2011)
- The Fanconi Hope Charity is preparing a fundraising drive to cover the costs of implementing and running such a Registry
Other Registries
- Action Duchenne Registry
