Little Princess Trust
Broadway House
32-35 Broad Street
Hereford
HR4 9AR

Registered Charity No. 1176160

Research Focus: ''Getting it right first time'' for children with renal tumours

31 January 2019

Lead investigator: Dr Tanzina Chowdhury, Great Ormond Street Hospital 
Funded by the Little Princess Trust in partnership with CCLG
Awarded January 2019
Award: £97504.06

Across Europe, 1000 children are newly diagnosed with cancers of the kidney (renal tumours) each year. A high proportion of these children are successfully treated with surgery, chemotherapy and radiotherapy, but there are many for whom the treatments don’t work, and who subsequently die. The treatments also carry unpleasant side effects which affect quality of life. To improve treatment and quality of life for these children, we urgently need to improve diagnosis and treatment to “get it right first time”. Our aim is to increase the survival and quality of life in children with renal tumours.

We have consulted regularly with parents of children with renal tumours, which has helped us decide our research priorities. These are:

Understanding why some children relapse, and working to reduce the risk of that happening.
Finding ways of diagnosing renal tumours early and accurately.

This study, UMBRELLA will address those in two parts.

Improve diagnosis quality by a) Reviewing patient scans and tumour samples to generate standardised high quality data in a Central Review process. b) Scan children earlier to detect if the disease has spread to the lungs, since they will require more treatment, and early treatment is more successful. c) Examine tumour samples for a marker “absolute blastemal volume”. This is a marker for a high risk tumour that needs increased treatment.
Improve the quality of healthcare delivery. We will use data about these children to compare UK treatment and diagnosis with Europe. We will evaluate delays and survival rates, and use the data to benchmark treatment to ensure we “get it right first time”. We will analyse the radiology and tumour data in the National Renal Advisory Panel (NRAP).

Together this research proposal will evaluate the effectiveness of timely diagnosis and treatment of children with renal tumours to understand and resolve gaps in healthcare. This will reduce the burden of disease at diagnosis, and thus reduce the burden on healthcare services of treating children with a higher amount of disease at diagnosis or at relapse, thus allowing services to be more rationalised for other patients and members of the public in need of healthcare services. This will also positively impact on the public by promoting the health and well-being of carers looking after children with cancer.

 

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