Dr. Chris Jones, The Institute of Cancer Research, at the Royal Marsden Hospital in London.

“Bringing together these kind of researchers and families at this sort of meeting, this is really probably my favorite meeting that I go to: it's really inspiring to see all the other researchers and clinicians, hearing about what they're doing, look for obvious areas that we could work together, but also being in the same room as the families, and the foundations, hearing their stories.”

About the Value of Collaboration and DIPG Registry

It was just a fantastic initiative to pull together such a huge resource of clinical data and then eventually genomic data and samples and models derived from those samples worldwide.

“Linking together the international registry and the European registry really represents a unique resource to tap into to really understand this terrible disease better.
We do a lot of different things in my lab through the cell-based assays and the mouse modeling as well. A lot of what we do is the genomics and that involves pulling together data from around the world -- from generating our own data in-house with the samples that are sent to us. Now we work alongside clinical trial cohorts as well so we try to do rapid turnaround of those genomic profiles.

A lot of what we've done has been to pull this together from around the world so that relies on the good grace of researchers worldwide to share their data to make it publicly available. And then we have really talented bioinformaticians who try to put this together from different sources, different platforms so they can really get the fullest possible picture of DIPG.”