Improving treatment decisions and outcomes in low grade glioma

This study aims to analyse over 1000 childhood low-grade glioma (PLGG) patients treated at Great Ormond Street Hospital over the past 40 years to look at the factors that influence patient survival and quality of life.

PLGG is a group of diverse tumour types which can affect any part of the brain or spine and at any age from infants to teenagers. Although, most patients survive the tumour, children still die and, in many cases, PLGG runs a chronic course of multiple tumour regrowth and treatments. This means that many survivors have a very significant impact on the quality of life from both tumour and the 'burden' of treatments including surgery, chemotherapy and radiotherapy.

Although, recent advances in the understanding of the biology of PLGG have allowed better classification and development of new targeted therapies the choice of management of PLGG has not been fully optimised.

The research team has collated a database of all PLGG treated since 1980 with clinical, treatment and outcome details and have tumours samples on over 500 of these cases.

The team will contact PLGG survivors and their families who are at least 5 years from diagnosis and invite them to complete validated questionnaires covering all aspects of daily living and quality of life. This will provide a “cross-sectional” snapshot of the impact of having a PLGG on patients and allow a comprehensive analysis of how the clinical, biological and treatment factors influence the long-term outcomes.

The researchers plan to develop a study team which includes parents and if possible PLGG survivors to consider the results and produce a medical model/guidelines to assist doctors/patients and their families in making informed and shared treatment decisions. This will allow a more individualised approach in the choice and timing of specific treatments for patients during the course of their illness.