Al's Comment:

 This is very scary - about 7% of the time when a parent is told their child has a DIPG (from reading an MRI)  the doctor is wrong.  These tumors are rare - so most neuro-radiologists do not see enough of them to be experts in it.  This is why you need a second opinion on the reading of the MRI.  All DIPG and DMG patients should join the DIPG registry. In the USA it is at https://dipg.org/dipg-research/dipgdmg-registry/ and internationally at https://dipgregistry.org/  Both will have experts review your MRI for free and let you have a free consultation with experts. The Musella Foundation helped fund a small part of these registries and consultation programs via our participation in the DIPG Collaborative. We also offer similar services to Glioblastoma patients with our registry at https://virtualtrials.org/xcelsior.cfm


Posted on: 06/01/2022

Accuracy of central neuro-imaging review of DIPG compared with histopathology in the International DIPG Registry

 


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