It appears that this is not an unusual problem as research in neuro-oncology indicates there is a large spectrum of childhood brain tumours that remained to be clearly defined. In an effort to organize clinical and biological research into rare brain tumours of childhood, a group of neuro-oncologists formed a rare brain tumor consortium that has enabled a series of large-scale biological studies leading to discovery of new brain tumour entities such as ETANTR.
The consortium has now launched a much-anticipated web based registry that will enable parents as well as physicians anywhere in the world to contribute to a repository of clinical data as well as biological materials. It is anticipated that the substantial clinical data accumulated through a formal registry will inform development of treatment protocols for these patients with these rare diseases, which currently receive empiric therapy.
Investigators that contribute to the registry can look forward to exploiting this shared resource for patient management as well as clinical and biological research into rare brain tumours.