The importance of international collaboration

The extremely rare nature of PNET makes it challenging for researchers to obtain enough tumour samples to conduct a viable local study. This has resulted in researchers collaborating around the world to share tumour samples and data so as to achieve the critical threshold of minimum numbers required to be able to make credible findings.

There are currently a number of research projects occurring.

The PNET International Working Group

The largest PNET research project involves an international consortium comprising a large number of Neuro-Oncologists across the world. The group operates in over 6 countries, including Canada, USA, United Kingdom, Germany, Australia and Italy.

The group is led by:

  • Dr Annie Huang (Toronto),
  • Dr Jordan Hansford (Australia),
  • Dr Marcel Kool (Germany) and Dr Katja Von Hoff (Germany).

In total, there are over 14 very experienced doctors working collaboratively to undertake this important research.

This group is conducting studies into the unique biological and pathological markers of PNET tumours using molecular profiling techniques.

Working collaboratively, they have been able to bring together 100 tumour samples from patients across the world and the size of the study is expected to increase dramatically by the end of the year.

Rare Brain Tumours Consortium, Canada (‘RBTC’)

This large international consortium is also undertaking invaluable PNET Research as part of its research into rare children’s brain cancers. Follow the link below to read more about the goals and work of this large research network.


Research into ETMR’s

Significant research is being undertaken into Embryonal Tumours with Multi-layered Rosettes (ETMR’s) by the various international researchers involved in the PNET Working group mentioned above. We will continue to provide updates as this research is published.

See link below for RBTC Canada