The rarity of the tumour and the scarce number of cases that are diagnosed. This leads to research resources and efforts being used to study other types of cancer that affect a larger number of individuals.
Furthermore, it is practically impossible for just one centre to carry out a project or clinical trial by itself, given that it would take years to obtain the minimum number of cases needed to do so. Therefore, collaboration between different research centres at an international level is essential to progress.
The extreme difficulty of obtaining tumour tissue samples, essential for research. This is due to the fact that the tumour’s location makes surgery impossible and biopsy, until very recently, excessively risky. Most samples have been excised from the autopsies of boys and girls who have passed away due to this disease.
Without the collaboration and involvement of families who have gone through this terrible experience, the cure for brain stem gliomas will always be out of reach.