UK & Ireland Fanconi Anaemia Family/Clinical Network

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 project committee has been established including representation from the FA Clinical network and also an FA parent
• Provisional terms of reference and a minimum dataset have been established
• The Fanconi Hope Charity is to have a stakeholding role
• A presentation on the status of the Registry was given by Dr Beki James at the UK FA Meeting in September 2009.
• For more details please contact Dr Beki James, Genetics & Epidemiology Unit, University of York