Update on NCI Genomics Workshop

GenomicsDebrief-April2015 Earlier this week, the NCI's Office of Advocacy Relations hosted a webinar to debrief the community on a childhood cancer genomics workshop held back in February. CCCA's president Susan Weiner served as one of four advocate representatives at the workshop, and we reported on the meeting in our February bulletin (PDF).

Dr. Malcolm Smith provided an overview of the February workshop and its outcomes in the debriefing. The two-day workshop focused on brain tumors, sarcomas, leukemias and embryonal tumors. Dr. Smith presented conclusions from the workshop, including the reality that childhood cancers involve fewer - and different - molecular mutations than adult cancers, so the lessons from adult cancers don't always benefit pediatric cancer research. Furthermore: "For most childhood cancers," said Dr. Smith, "we don't have this relationship between a gene that's mutated and a targeted agent available to treat that mutation."

The workshop identified current gaps in pediatric genomic research, including the need for more research into the genomics of relapse and uncommon cancers or sub-cancers, and the importance of sharing data globally to facilitate collaboration. One advocate representative stressed that more family education is needed on the importance of donating tissue at relapse, not just at diagnosis.

Dr. Weiner emphasized the importance of considering consent and the ethical issues surrounding children's participation in research, as genomics translates into new clinical trial opportunities for children.

We are excited about new and ongoing NCI research opportunities, including the Pediatric MATCH trial and the Pediatric Preclinical Testing Consortium, which hold real promise for bringing genomic-based therapies to kids.


Also this week: The Senate passed (92-8) bipartisan SGR repeal legislation on Tuesday night that includes a two-year clean extension of the Children's Health Insurance Program (CHIP). The president signed the legislation into law late Thursday evening.

Learn more:

  • Georgetown University Health Policy Institute Blog: "This clean package came together thanks to the dedication, smarts, and collaboration among so many diverse players in the child health community in their relentless dedication to children’s coverage. The work is not done. But make no mistake: This is a victory for kids and families."
  • Kaiser Health News Doc-Fix FAQ