The working group is at present composed by 69 members that expressed during different meeetings their willingness to join. They are specialists of different disciplines coming from whole Europe. Commonly dedicated operative meetings are instead attended by around 20-25 people generally having activities in dedicated projects of pediatric oncology, radiotherapy, neurosurgery, biology, radiology, statistics, rehabilitation and quality of survival.
At present, a second SIOP Ependymoma trial is being launched, that has the international sponsor of Centre Leon Bérard in Lyon and is chaired by Didier Frappaz. The protocol was born after around 10 years of collaborative work and meetings. This trial will be joined by 16 nations in Europe that have already shown their interest and gone through a process of harmonization called VHP(Voluntary Harmonization Procedure). The comprehensive aim of the trial is summarized by the following picture.
Patients with or without post-surgical residual disease of any age until 22 years will be eligible for the three arms of the trial, that will include three different randomized questions. All the other patients, not elegible for different reasons, will be registered in the observational study that will therefore depict the epidemiology of this rare tumor in Europe.
Particular interest will be put in the trial to the role and possibility to perform second-look surgery thus reaching complete resection, the only universally recognized favourable prognostic factor in ependymoma. The large cohort hopefully involved in the trial will allow to validate old and new biological markers (1q, hTert, nucleolin, tenascin, LAMA2, NELL, etc).
A side study with biological and traslational purposes is already built inside a consortium called BIOMECA that will collect surgical samples, after appropriate and mandatory centralized pathological diagnosis.
The achronym BIOMECA and its aims are therefore: BIOMarkers of Ependymoma in Children and Adolescents Þ Validation of Existing markers; Biomarker Discovery ; Selection of BEST Biomarkers ; Robust stratification for future trials ; Novel therapeutics ; Test proposed SIOP Histological Grading system.
In the last years, apart from building the protocol, great interest and study has been dedicated to all the aspects needed for its generation, like central pathological review and consistency on grading among different neuropathologists, role of primary and second-look surgery and way to refer patients when needed for further excision, role of new radiotherapeutic technique and non-conventional fractionations, role of chemotherapy, etc. In July 2013 a Ependymoma consensus meeting with specialists both from Europe and US and Canada has been held in Heidelberg. A survey on re-irradiation at relapse is being conducted among SIOP centers in Europe.
The structure of the Ependymoma Working Group is the following:
- Present Chair (until 2016): Maura Massimino
- Co-chairs: Katja Von Hoff and Marie-Lise van Veelen
- Past Chair and international PI of the second SIOP Ependymoma protocol Didier Frappaz