New NCCR US Registry Will Combine Data Sources to Improve Pediatric Cancer Research

The US National Childhood Cancer Registry (NCCR) is combining data from myriad sources to hasten and improve research into pediatric and young adult cancers. The registry will also draw information from birth defects registries and state departments of health.

The NCCR, still in early development, will gather data from the US National Cancer Institute’s existing Surveillance, Epidemiology, and End Results (SEER) Program and other population-based central cancer registries, as well as clinical trial participation data, pharmacy data, patient genomics, radiology reports, birth records, and detailed residential histories that can help identify prenatal environmental exposure risk factors, according to Lynne Penberthy, PhD, who presented this initiative at SIOP 2023, the 55th Congress of the International Society of Paediatric Oncology.

The NCCR is a subsidiary of the National Cancer Institute’s (NCI’s) larger childhood cancer data initiative, established by congress to “ultimately to capture data on every patient with cancer,” Dr Penberthy said. The registry includes data for pediatric, adolescent, and young adult populations — people 0 to 39 years old at the time of a cancer diagnosis — since 1995. The NCI is working with the North American Association of Central Cancer Registries and others to build the NCCR.

Data sources for this effort will include 25 central cancer registries collectively representing about 70% of the US population, clinical trial participation data, pharmacy data, patient genomics, radiology reports, and detailed residential histories that might help identify prenatal environmental exposures that increase the risk of some malignancies, Dr Penberthy explained.

CVS, Walgreens, Rite Aid, and United Health Care are providing pharmacy data, and United Health and Medicaid are providing claims data on patients’ treatments and comorbidities. The registry will also draw information from birth records, birth defects registries, and states’ departments of health, she noted.  

“The goal is to approach 100% of the US population,” Dr Penberthy said. “The core data for this are derived from population-based cancer registries, but we’re building on that and expanding to include additional relevant information such as detailed longitudinal treatment, genomic characterization of the tumor, and the trajectory of care for that patient from diagnosis until death. That includes the identification of subsequent primary cancers and potentially recurrent disease or relapses.”

This work involves several working groups that are working on quality assurance, guiding access to sensitive data, and identifying how best to harmonize data from different sources. A potential issue Dr Penberthy pointed out is that patients who move across state lines are sometimes represented in more than 1 central state tumor registry.

Summary statistical data will be updated annually and made available online and researchers will be able to apply for access to more detailed data.

Notably, an updated NCCR Explorer tool was released a month prior to her presentation that included precalculated statistics and dynamic data visualizations based on user-specified criteria, such as particular age groups and tumor histology. She also noted that geographic identifiers will not be available, to protect patients’ privacy.

Disclosures: Dr Penberthy reported no disclosures. Please see the original reference for a full list of disclosures.

Reference

Penberthy L, Kohler B. Creating a resource for pediatric cancer research: US national childhood cancer registry. Presented at SIOP 2023. October 11-14, 2023. Ottawa, Canada. Abstract O139.