Paediatric ependymoma is the second most common malignant brain tumour of childhood with approximately 50% of cases recurring. In view of thisandthesignificantmorbidityassociatedwithradiotherapy,chemotherapy and surgery to the developing infant brain, appropriate, evidence-based interventions to the primary tumour need to be undertaken. Central radiological review is integral to the SIOP II Ependymoma clinical trial to ensure patients are allocated to the correct stratum. We have therefore established a weekly Ependymoma Multi-Disciplinary Advisory Group (EMAG) meeting. Core members include paediatric oncologists, clinical oncologists, radiologists and neurosurgeons who discuss cases collaboratively to devise experienceand evidence-based investigation and management strategies. As an inclusive process it is hoped that centres managing children with ependymoma across the UK will join the EMAG to present their cases for discussion. Radiological images are shared securely using the Quentry software tool from Brainlab with all EMAG members. The first EMAG took place on 20th August 2015 and as of February 2016 we have undertaken 15 meetings, discussed 22 patients (9 on multiple occasions following further imaging/surgery/treatment) with cases referred from 10 UK trusts. In 2016, colleagues in Denmark began referring patients. Feedback from referring centres on the meetings has been very good with clinicians finding it useful to discuss therapy regimes with other ependymoma experts. We recommend this approach to clinical trials investigating and managing rare paediatric diseases toprovidesupporttotheresponsiblecliniciansandalsotoensurethattrialprotocol is adhered to as closely as possible.
CITATION STYLE
Storer, L. C. D., Darren, A., Paine, S. M. L., Kearns, J., Layfield, R., Walker, D. A., & Grundy, R. G. (2016). EPN-09KETOLYTIC AND GLYCOLYTIC ENZYMATIC EXPRESSION IN PAEDIATRIC EPENDYMOMAS: IMPLICATION FOR KETOGENIC DIET THERAPY. Neuro-Oncology, 18(suppl 3), iii32.1-iii32. https://doi.org/10.1093/neuonc/now070.08
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