Fanconi Hope has taken an important step forward in support of improved care for the Fanconi Anaemia (FA) community in the UK by funding a long term study through Manchester University called: “Observational study for long term health implications of individuals affected by Fanconi Anaemia”.
One of the first activities in this study, which started in May 2016, was to fund a Liaison and Research Coordinator for Fanconi Hope, as a central point of contact for patients and parents, clinicians and researchers across the UK for all matters relating to Fanconi Anaemia, whether it be queries from parents about what treatment to expect, queries from patients on what regular check-ups will be required in adulthood, or queries from consultants who have little experience in dealing with FA due to the rare nature of the condition.
We are delighted therefore to announce the appointment of Beth Lee as Liaison and Research Coordinator. Beth is an experienced paediatric nurse, who has been working at Royal Manchester Children’s Hospital for nearly thirty years, mostly in paediatric haematology and oncology. For the last eight years she has been the lead nurse for the Fanconi Anaemia and cancer associated syndrome service at the Royal Manchester Children’s Hospital. Beth will be supported by experienced consultants in Manchester and Cambridge who are running the study.
Beth is working 1 day/week initially and if you would like to drop her a line to introduce yourself, she will be delighted to email or phone you at a mutually convenient time to learn more about how she can help you.
We would like to thank all those of you who have made this possible by fundraising for Fanconi Hope and would urge you to continue fundraising so that we can extend the study and the support that it brings beyond its initial 5 year duration.
More about the Study and its Objectives
We have funded this study because although guidelines for the management of FA are available for clinicians and patients, these mainly address FA only in childhood. The extent to which these guidelines are implemented is not known, and may vary significantly between UK centres. Added to that there is sparse evidence for the management of adolescents and adults with FA, and in particular no consensus on how to treat squamous cell carcinomas arising in FA.
The Study, which is designed to meet the emerging needs of the increasing adult populations with FA and make the best possible management available for children and adults with FA, is fully funded by Fanconi Hope and is being run by a highly experienced team of FA consultants and researchers in Manchester and Cambridge: –
The objectives of the study are to:-
- Provide a first point of contact for patients and parents, clinicians and researchers across the UK
- Over time, establish a database of clinical and genetic data of FA patients in the UK – “the UK FA Registry”
- Evaluate current care pathways and provisions for the management of FA in children.
- Evaluate current care pathways and provisions for the management of FA in adults.
- Support the provision of support and clinical care coordination for patients with FA.
- Facilitate sample collection of tissue from FA patients and storage at the Manchester Cancer Research Centre Bio Bank to facilitate translational research.