Data sharing will be a major thrust of Trump’s $500 million childhood cancer plan

President Donald Trump’s proposal in his State of the Union address earlier this month to spend $500 million over 10 years on pediatric cancer research will begin in 2020 with a focus on sharing patients’ data, federal officials say. That plan is getting a mixed response from researchers and patient advocates, who also worry that the initiative will come at expense of other parts of the National Cancer Institute’s (NCI’s) budget.

During his speech, Trump described a “very brave” guest sitting with first lady Melania Trump—10-year-old brain cancer survivor Grace Eline, who raised funds for pediatric cancer research before developing the disease herself. “Many childhood cancers have not seen new therapies in decades. My budget will ask the Congress for $500 million over the next 10 years to fund this critical life-saving research,” Trump said. A $50-million-a-year boost would mean an 11% increase over the $462 million that NCI and other National Institutes of Health (NIH) institutes expect to spend this year on pediatric cancer. (In contrast, Trump administration officials have warned that they expect to issue a budget request to Congress next month that calls for an overall 5% cut to nondefense spending in the 2020 fiscal year that begins 1 October.)

The Trump announcement came as a surprise to staff at NCI and cancer patient groups. NCI officials say details are still being worked out. But during a conference call with researchers and advocates on 14 February, NCI Director Ned Sharpless in Bethesda, Maryland, who has made “big data” part of his agenda, said data sharing will be a major initial thrust of the initiative. An NCI spokesperson explains to Science Insider that $50 million in 2020 “would afford a unique opportunity to leverage the power of existing data and develop new knowledge that will drive discovery and development of new approaches to treat childhood cancers.”

That’s welcome news to University of California, Santa Cruz, genomics researcher Olena Morozova Vaske, who with David Haussler runs a pediatric cancer genome project. She and Haussler say that because pediatric cancers are very rare, it’s crucial to combine patient data from academic and industry clinical trials as well as international patients. That will take implementing new standards and building new digital infrastructure. Existing databases “need to all be talking to each other so we can consolidate data,” Vaske says. “You really have to make sure you’re capturing information from every single patient.”

But some pediatric oncologists aren’t so sure that’s the best way to spend the first $50 million. “Data sharing is of the utmost importance and the community is already doing it arguably as well as possible,” says Crystal Mackall of Stanford University in Palo Alto, California. And efforts to pool genetic data on childhood tumors may be less productive than for adult cancers because pediatric cancers have relatively few mutations, which makes them less vulnerable to gene-targeted or immunotherapy drugs, says Peter Adamson of the Children’s Hospital of Philadelphia in Pennsylvania, chair of the NCI-funded Children’s Oncology Group. He suggests “the answers [to treatments] are not going to be revealed necessarily through whole genome sequencing” of children’s tumors.

He and Mackall point to other needs, such as figuring out how to target so-called fusion proteins produced when two genes combine, which often drive the growth of pediatric tumors. Fusion proteins are already a focus of the cancer moonshot launched by former Vice President Joe Biden, but the investment could be larger, Adamson says. “It’s a harder problem [than data sharing] but will probably yield a higher return,” he says.

Advocacy groups also point to the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act of 2018, a law Trump signed last summer that authorizes Congress to put $30 million annually for 5 years into pediatric cancer including biobanking and studies of survivors. “A lot of us want to build on and leverage what already exists,” which means the funding called for by Trump should come in addition to fully funding the STAR Act, says Danielle Leach, senior director of advocacy and government relations for St. Baldrick’s Foundation in Arlington, Virginia, and co-chair of the Alliance for Childhood Cancer.

Another worry is whether the expected 5% cut for many research agencies in Trump’s 2020 budget request means the increase in pediatric cancer funding will come at the expense of other programs. “Until we see what [Trump] is proposing in funding for NIH and NCI in FY [fiscal year] 2020, we remain guarded and concerned,” says Jon Retzlaff, chief policy officer for the American Association for Cancer Research in Washington, D.C.

As for the details of the initiative, NCI doesn’t expect to form a blue-ribbon planning committee, as it did for the moonshot. But, “We look forward to working with the cancer community and we will continue engaging them in the coming months,” the spokesperson says.