How Real-Time Data Sharing Benefits Children with Cancer

By Olena Morozova, Ph.D., Co-Founder of UC Santa Cruz Treehouse Childhood Cancer Initiative, and David Haussler, Ph.D., Director of UC Santa Cruz Genomics Institute

The Cancer Moonshot is a Mission, and All of Us #CanServe

Vice President Joe Biden’s efforts to encourage the cancer community to share data are already demonstrating the large impact that genomics research can make. Many stakeholders are launching data sharing initiatives and condemning the creation of silos or isolated data repositories.

With the community largely on board with the idea of sharing genomic and de-identified clinical information, now is the time to realize how we can use this data to benefit cancer patients treated in the clinic today. In order to do this, we need a paradigm shift in how data sharing takes place — we need to think beyond sharing data following the publication of research, which can take years, and move toward sharing patient genomic data in real time.

While the failure to share data hurts all cancer patients, it hurts children with cancer the most. This is because childhood cancers are rare; therefore, assembling patients with similar diagnoses into large groups before making the data available takes even longer than it does for adults. With real-time data sharing, the pediatric cancer community is poised to lead the way in revolutionizing how we share genomic data and how this shared data can benefit patients right now.

The Treehouse Childhood Cancer Initiative partners with organizations committed to sharing patient genomic information in real time, such as Pacific Pediatric Neuro-Oncology Consortium, Children’s Brain Tumor Tissue Consortium, Lucile Packard Children’s Hospital at Stanford University, Children’s Hospital of Orange County, University of Michigan Comprehensive Cancer Center, Children’s Hospital of Philadelphia and British Columbia Cancer Agency. Through these partnerships, we will evaluate whether real-time data sharing can provide new hope for children with cancer treated in hospitals today.

In a Treehouse clinical pilot project, California Kids Cancer Comparison, funded by California Governor Brown’s Initiative to Advance Precision Medicine, we saw proof that real-time data sharing can identify new and better treatment options for children with cancer. This approach enables comparing genomic information from a given patient to more than 10,000 previously studied genomic datasets from children and adults. Each week, we continue to accumulate new evidence that using shared genomic data to conduct such comparisons in the clinic can identify new treatment options for children with cancer.

Now with a generous grant from St. Baldrick’s Foundation, one of 79 grants awarded by the Foundation this summer, the Treehouse Initiative will expand its work internationally and will bring the potential clinical benefits of real-time data sharing to hundreds of difficult-to-treat pediatric cancer patients in the U.S. and Canada.

For 16 years — since the publication of the first human genome on the internet — UC Santa Cruz has led the community in sharing and analyzing genomic data in a global network that promotes collaboration. The first public cancer genome database we created, the NCI Cancer Genomics Hub (CGHub), has successfully led the way to a next-generation resource: the NCI Genomic Data Commons (GDC). The GDC is now the national foundation for cancer data sharing. By activating a common data pool for genomic comparison, built on the GDC, the Treehouse Initiative will allow patients at different hospitals to all benefit from the same largest possible knowledge base.

Real-time data sharing for clinical use requires two levels of trust: patients who trust the hospitals that are the primary holders (“stewards”) of their data, and the hospitals that trust the global sharing network through which de-identified genomic and clinical data become available to the community. By participating in the Treehouse Initiative, hospitals will share genomic changes that appear only in the tumor (“somatic changes”) publicly and in real time. For privacy reasons, genomic changes that occur in both tumor and normal cells (“germline changes”) will be stored securely in the GDC, with access restricted to qualified researchers. This is because germline information can be used to identify both the individual and his or her family, so its distribution requires additional control. The hospitals will also share basic de-identified clinical data publicly along with the somatic changes, but maintain restricted access stewardship of fully detailed clinical information.

In addition to the gene-targeted precision therapies that are suggested by insights from shared genomic data, every child with cancer needs access to precision immunotherapies. The development of immunotherapies that harness the power of the patient’s own immune system to fight cancer has provided treatment breakthroughs that have improved the lives of many adult cancer patients. However, few of these approaches have yet been applied to children with cancer. More data will help. The most widely-used cancer immunotherapies rely on the presence of molecules in a tumor cell (“neoantigens”) that make the tumor visible to the immune system. Just as for somatic changes, there is no family privacy issue in sharing neoantigen data, and we plan to provide open-source neoantigen prediction software to enable data stewards to publicly share neoantigens observed in children’s tumors, along with genomic data, in real time. This will significantly hasten the development of cancer immunotherapies for children.

By using real-time sharing of genomic and immune information, the Treehouse Childhood Cancer Initiative aims to double the number of children with cancer treated based on insights from genomic and immunogenomic analysis. We believe that the clinical impact of these analyses will be even further improved as more members of the community come on board, bringing their genomic and immune profiles to benefit each new child with cancer.

On a societal level, real-time data sharing will ensure that each family’s journey contributes immediately to the global data pool that will benefit the families that follow. It is only through such close-knit interactions among families, clinicians and researchers that we will ultimately be able to successfully attack and eventually cure cancer in every child and in every adult.

Treehouse Childhood Cancer Initiative ( was founded by Olena Morozova and David Haussler at UC Santa Cruz Genomics Institute in partnership with Robert Arceci (Phoenix Children’s Hospital), Alejandro Sweet-Cordero (Stanford University School of Medicine); Sabine Mueller and Adam Resnick (Pacific Pediatric Neuro-Oncology Consortium and Children’s Brain Tumor Tissue Consortium); Leonard Sender (Children’s Hospital of Orange County), S. Rod Rassekh, Rebecca Deyell and Marco Marra (British Columbia Cancer Agency), Arul Chinnaiyan (University of Michigan Cancer Center); and John Maris (Children’s Hospital of Philadelphia). Treehouse is endorsed by many members of the cancer genomics community, including Robert Grossman (University of Chicago), Richard Wilson and Elaine Mardis (McDonnell Genome Institute at Washington University School of Medicine and Nationwide Children’s Hospital), Richard Gibbs (Baylor College of Medicine), D.W. Parsons and Ching Lau (Texas Children’s Hospital), Timothy Triche (Children’s Hospital Los Angeles), Poul Sorensen (British Columbia Children’s Hospital), Michael Taylor (Hospital for Sick Children), Lee Helman and Javed Khan (National Cancer Institute), Soheil Meshinchi (Fred Hutchinson Cancer Research Center), Doug Hawkins (Seattle Children’s Hospital), and Justin Guinney (SAGE Bionetworks) as well as pediatric cancer advocacy organizations, including Kids V Cancer, Unravel Pediatric Cancer, Team G Childhood Cancer Foundation, Jacob’s Heart, Alex’s Lemonade Stand Foundation, and Team Finn Foundation and the St. Baldrick’s Foundation which is providing funding for this initiative.