I recently received an email from Count Me In’s Brain Tumor Project, previously called the “Brain Cancer Project.” Susie and I participated in the launching of the effort with other patients, advocates and the Broad Institute. In addition to volunteering, Susie was also an early participant.
The project name change is obviously to broaden participation from cancer patients to anyone in the US or Canada who has been diagnosed with a primary brain tumor. This makes sense as low grade tumors can recur as a higher grade malignancy. Susie is an example of this change, as her 1999 diagnosis was a Grade III Oligoastrocytoma and her 2013 recurrence was a Grade IV Secondary Glioblastoma (IDH1 mutant Astrocytoma).
The second change that is very welcomed is the project is now open to children, regardless of age. I know of family and friends whose children have suffered from pediatric brain tumors and cancers. Broadening this project to collect such data may help researchers look at a variety of conditions that occur within the central nervous system. More information on this announcement is available via the Pediatric Brain Tumor Foundation website.
Lastly, but not least, Count Me In has announced that they will be developing new workflows to return patient-specific results of germline and somatic sequencing in two rare cancers, osteosarcoma and leiomyosarcoma. I am hopeful that at some point in the future such workflow and information will be expanded to other projects, specifically the Brain Tumor Project.
These are all very promising developments. Hats off to the supporters and participants, and many thanks to the Count Me In venture.