Commitments: Data Sharing

Alex’s Lemonade Stand Foundation: Childhood Cancer Data Lab*

Alex’s Lemonade Stand Foundation will launch Refine.Bio, a free repository that will use deep learning to harmonize publicly available data, by the end of 2018.  There is enough publicly available disease data at the National Institute of Health to fill several hundred Libraries of Congress. Unfortunately, much of that information is processed by researchers in different ways. Translating that data into one consistent format so that all researchers can access and understand it is one of the jobs of the Childhood Cancer Data Lab (CCDL), founded by Alex’s Lemonade Stand Foundation (ALSF). The CCDL fulfills ALSF’s original Moonshot commitment to open the first big data lab of its kind that is dedicated to childhood cancer. The first product of the CCDL is Refine.Bio. Set to launch by the end of 2018, Refine.Bio will be available for free to all researchers. Already, the CCDL team is training pediatric oncology researchers on how to access and analyze this data to identify common patterns and produce experiments that will help accelerate cures for kids fighting cancer. The CCDL will also harness machine learning to provide greater insight into an individual’s specific biology that can lead to more targeted treatments for pediatric cancer.

American Society of Clinical Oncology: M-CODE

The American Society of Clinical Oncology (ASCO) and its nonprofit subsidiary, CancerLinQ LLC, MITRE, and Intermountain Healthcare are partnering to develop and launch M-CODE (Minimal Common Oncology Data Elements). This initiative will identify cancer data elements that would be essential for analyzing treatment across electronic health records (EHRs) and cancer practices to improve quality and care coordination.  Through this partnership, ASCO and CancerLinQ will provide clinical expertise and leadership in developing, piloting, and endorsing M-CODE. MITRE, with its experience in data interoperability, will develop an M-CODE-based Fast Healthcare Interoperability Resources (FHIR) implementation and Substitutable Medical Applications and Reusable Technologies (SMART)-on-FHIR application that will extract M-CODE data in computable formats and deliver reports to providers and patients—empowering shared decision making. Intermountain, as a participating CancerLinQ practice and leader in quality cancer care, will operate test sites for capturing M-CODE data and leveraging tailored reports. This collaboration, in consultation with the National Cancer Institute (NCI), could ultimately lead to greater interoperability and data availability leading to faster insights and progress for patients.

American Society of Hematology (ASH) Registry*

Launched in 2017, the American Society of Hematology (ASH) research-focused registry plays a vital role in advancing collaborative hematology research by facilitating the exchange of information on rare diseases and providing investigators with actionable data to answer critical research questions. Since its launch with initial pilot projects in sickle cell disease and multiple myeloma, ASH is committed to incorporate multiple myeloma data from at least two partners by December 2018 and anticipates rapidly scaling dataset acquisition from additional partners in multiple myeloma throughout 2019. Funding for the Registry is budgeted at nearly $20 million over five years. What sets the ASH Registry apart is that it reduces errors, adds more research projects to the pipeline, cuts and stabilizes costs, and decreases the amount of time it takes for new discoveries to ultimately improve the lives of individuals living with hematologic disorders.

Center for Data Driven Discovery in Biomedicine at the Children’s Hospital of Philadelphia: The Kids First Data Resource Center*

The Kids First Data Resource Center (DRC) is a new, collaborative, data sharing empowered pediatric research effort, launched by the Center for Data Driven Discovery in Biomedicine at the Children’s Hospital of Philadelphia, with the goal of understanding the genetic causes of and the links between childhood cancer and structural birth defects. The Kids First program builds on the White House Moonshot commitments and pediatric brain tumor initiatives to define entirely new ways through which cross-disease and collaborative research can de-silo and accelerate discovery efforts across pediatric cancers and other rare diseases. By end of 2018 The Kids First will make available over 25,000 pediatric whole genomes with harmonized clinical data for research discovery, the largest dataset of its kind every created. To accomplish this mission the DRC is creating a novel integrated and interoperable research platform able to intersect and empower research across the NIH, Consortia and independent researchers, while harmonizing the data and providing over 300 open access tools. The launch will contain 9 harmonized datasets available for collaborative research including the largest pediatric brain tumor dataset, with an additional 14 to be released. Partners include Center for Data Driven Discovery in Biomedicine at Children’s Hospital of Philadelphia, Ontario Institute for Cancer Research, Children’s National Health System, Oregon Health & Science University, Center for Data Intensive Science at University of Chicago and Seven Bridges.

The Eliminate Cancer Initiative: The Universal Cancer Databank

The Eliminate Cancer Initiative (ECI) was created to reward collaboration, accelerate research breakthroughs, and improve care for all cancer patients. To accomplish this goal, ECI announces the creation of the Universal Cancer Databank (UCD). The UCD is a global databank, that is 100% philanthropic and anonymized, that will catalyze unprecedented information sharing for researchers. The UCD’s goal is to collaborate with every patient, provider and existing platforms to remove siloes, standardize data and ensure security. The UCD provides patients a platform to donate their data, including medical records and genomics. It will use genomics, sequencing, and immune profiling to provide a standardized method to correlate this data with medical records and clinical trials. In addition, the UCD will use artificial intelligence to facilitate scientific discovery, turning its database into a free and equal virtual laboratory. The goal is for 30% (3,960) of the U.S. brain cancer patients to donate their data by 2020. By 2025, the UCD will be globalized and aims to include donated data from 20% (12,500) of worldwide brain cancer patients. This aggregation of brain tumor data has never been realized and can unlock treatments and cures for brain cancer patients.

EMD Serono: Global Oncology Big Data Alliance (GOBDA) – Rare Cancer Registry and Rare but Serious Adverse Events Initiative

Global Oncology Big Data Alliance (GOBDA) announces that it will launch, in early 2019, a collaborative Merkel Cell Carcinoma (MCC) registry, together with investigators from the MCC Task Force, U.S. Food and Drug Administration (FDA) specialists, and patient advocates, to better understand the significant unmet need and uncover new hypotheses within this rare patient population. GOBDA’s mission is to connect and empower the oncology community with big data and advanced analytical capabilities to accelerate discovery, development, and delivery of innovative treatment to cancer patients. Unlocking the potential of patient-level clinical data will improve the ability to understand diseases and develop novel therapies for patients with high unmet need. Combining the power of machine learning and advanced analytics will be another focus of GOBDA. With the advent of immuno-therapies, specific rare but serious immune-related adverse events have been observed. Understanding and detecting early signals could help predict and better manage this significant unmet need.

Syapse: Syapse Learning Health Network*

Ascension, Banner Health, Inova Health, LSU Health, OhioHealth, and Seoul National University Hospital are each committing to sharing real-world evidence upon joining the Syapse Learning Health Network. They will participate along with founding members Aurora Health Care, Catholic Health Initiatives, Dignity Health, Henry Ford Health System, and Providence St. Joseph Health. Originally announced at the 2016 White House Cancer Moonshot Summit, the Syapse Learning Health Network is a global precision oncology data sharing network dedicated to improving cancer care across communities. The Network comprises data and physicians from 412 hospitals across the United States and South Korea and will impact 215,270 new cancer cases annually. Syapse fulfilled its original Cancer Moonshot pledge to onboard at least 5 new health systems in 12 months and increase clinical trials access across 20 community sites within 15 months. Syapse enables its broad network of community providers to leverage shared data, providing powerful insights to clinicians and increasing patient access to innovative cancer therapies. Syapse is also announcing a commitment to data sharing with the National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) Program, which will bring high-quality registry data to oncologists in Syapse’s network and enhance cancer surveillance efforts by providing data that is difficult to capture through traditional methods.