I think from the experience in North America we were behind both our European and Asian colleagues in working as a collaborative group. Over the last few years we’ve now really established our ability as a national consortium to be able to perform studies for CNS germ cell tumours. Some of the things that we already found out is how can we really find the subsets of patients who need very intensive therapy, how can we find those subsets of patients who need less intensive therapy i.e. where we focus on not just the treatment but the aftermath of the treatment itself.
What outcomes can we expect in the future?
We’re excited at specifically ACNS0122 which was our national trail for the secreting or nongerminomatous germ cell tumours and high risk germinomas. In that we have excellent survival data and outcome is a very important work to look at specific outcomes in those patients, endocrinologic follow-up looking at hearing, looking at quality of life. Now all studies evolve and unfortunately in the study that we performed we did not build into the protocol specific neuropsychologic testing but the lessons we learned now have been in place for the future trial which is now open and accruing at a much faster rate than any previous US trials ever had. In these trials for both germinoma and nongerminomatous germ cell tumours is mandatory neuropsychologic testing. Because I think that’s really one of the critical elements, it’s not just about survival, it’s about how you survive. I like to tell families that the cost of the cure has a lifetime to be repaid and I don’t mean financial. So I think we have to be very careful and in the trials that we’re now performing the goal is not just survival but how we can increase that quality of life and so we have to measure that. There are papers out there that patients at presentation already have some neuropsychologic sequelae, some memory issues from the tumour themselves. So without baseline testing we have to know what is the tumour, what is treatment and how best to maximise for the children as they grow throughout their adulthood.
How is the psychological testing conducted?
In the Children’s Oncology Group study that is now open for all CNS germ cell tumours there is another study called ALTEC which is a neuropsychologic battery that will be in place for all patients. So as part of the eligibility criteria to enrol in our trial you must enrol in that neuropsychologic testing and it’s a longitudinal quick based neuropsych testing. It certainly is not the six hours of individual testing that is performed for patients after therapy but it will give us baseline and longitudinal data and can be supplemented by further testing.
We have to work as a world community and not as individuals in individual countries. In the trial that I performed I think we have good evidence now to show that carboplatinum is equally, if not greater, efficacy than cisplatinum and we want to get away from this because of some of the risks of administering cisplatinum, not just audiologically but the management of patients with endocrinopathies.