Childhood cancer patients comprise a special and understudied population of cancer patients. Approximately 15,000 childhood cancer patients are diagnosed in the United States annually, compared with the 1.7 million new cancer cases diagnosed each year. Due to their rare nature, it has been challenging to collect substantial and vital information on a large scale to study and understand the needs for this unique population of cancer patients.
The National Childhood Cancer Registry (NCCR) is envisioned as a connected data infrastructure to enable sharing of childhood cancer data from multiple and heterogeneous data sources. Incorporating available data on genomic and tumor characterization, residential history, social determinants of health and measures of financial toxicity, longitudinal treatments including oral agents, and longitudinal outcomes data including recurrence and subsequent cancers can enhance the core infrastructure of registry data on pediatric patients.
In 2020, 10 NCI-designated Cancer Centers were awarded supplemental funds to aggregate, integrate, and submit their existing data beyond traditional cancer abstracts on childhood cancer patients under 20 years of age receiving care at the cancer center to the NCCR in order to expand that infrastructure and ultimately support improved understanding of childhood cancer.
The addition of longitudinal data from Cancer Centers in alignment with the recommendations from Board of Scientific Advisors will support collaborations between Cancer Centers, local area providers, public health practitioners, and other public health professionals to utilize the centralized infrastructure (NCCR) to address questions related to childhood cancer patients with special attention to long term outcomes including recurrence and second primary cancers, detailed treatment information, and further characterization of the cancers.
To explore funded sites, click on the icon in the top left corner of the map, click on any pin on the map, or scroll down to view a funded initiatives table.
|Cancer Center||Address||National Childhood Cancer Registry|
|Abramson Cancer Center||3400 Spruce St., Philadelphia, PA 19104|
|Dana-Farber Cancer Institute/Harvard Cancer Center||450 Brookline Ave., Boston, MA 02215|
|Herbert Irving Comprehensive Cancer Center of Columbia University||1130 St Nicholas Ave., New York, NY 10032|
|Huntsman Cancer Institute||2000 Circle of Hope, Salt Lake City, UT 84112|
|Memorial Sloan Kettering Cancer Center||1275 York Ave. New York, NY 10065|
|The Ohio State University Comprehensive Cancer Center||650 Ackerman Road, Columbus, Ohio 43202|
|Roswell Park Comprehensive Cancer Center||Elm & Carlton Streets, Buffalo, NY 14263|
|University of California San Francisco, Helen Diller Family Comprehensive Cancer Center||1450 3rd St., San Francisco, CA 94115|
|University of Kentucky, Markey Cancer Center||800 Rose St., Lexington, KY 40536|
|University of Michigan Rogel Cancer Center||1500 E. Medical Center Drive, Ann Arbor, MI 48109|
|University of Texas Health Science Center at San Antonio||7979 Wurzbach Road, San Antonio, TX 78229|