I have been participating for much of this year, representing the viewpoint of a brain cancer care partner, in the Low Grade Glioma Registry’s OPTIMUM research initiative. A couple of months ago I learned this initiative was part of the Participant Engagement and Cancer Genome Sequencing (PE-CGS) network, which is also part of the Cancer Moonshot Initiative. The network spans multiple research centers looking at collaborative methods to address common issues and best practices were appropriate.
I was invited to join the PE-CGS Annual Meeting, held at Ohio State University. I had a couple of months heads up to arrange for family to help care for Susie. Her eldest sister, Ann, flew in from Virginia. I met Ann at the airport, gave her our car, and headed up to Columbus. I had updated a pamphlet with quick information for Ann to have, in case needed, like daily/ weekly schedule, drug frequency/ dosage/ instructions, contacts and insurance details. They also had plans on seeing cousins and their mom, so it was going to be a fun few days for Susie.
The two day annual meeting was great. I was impressed with the groups who participated. There were oncologists, researchers, genomic scientists and patients/ advocates from all over the US. Beyond the OPTIMUM initiative on low grade glioma/ brain cancer, these participants worked on specific diseases affecting children, southwestern tribal nations, Hispanic/ Latino community and African Americans. I was not sure what to expect with this annual meeting, maybe progress presentations along with detailed practices/ lessons learned for sharing with others. The event was actually broken into the following three dimensions:
- Opening Session/ Getting to Know Each Other (By Participant Type and Mix-And-Match)
- Research Collaboration Work-streams (Solving questions identified prior to Annual Meeting)
- Lessons Learned/ Report Outs (Panel Discussions)
The Annual Meeting was quite different than any conference I have attended. I really liked the very personal approach, engagement and collaboration. Meeting the Low Grade Glioma team, eating meals with everyone and really getting to know each other was fabulous. I’m looking forward to our follow-on work and next year’s event, to be held in New Mexico (so maybe better weather).
