How an NCI Data Registry is Helping Diagnose, Treat Rare Pediatric Cancers

Tue, 08/27/2024

The Rare Cancer Initiative is enabling the research community to access more clinical data to improve health outcomes for children diagnosed with rare cancers.

A special initiative and data registry at the National Cancer Institute is helping researchers understand and treat rare childhood cancers.

Dr. Mary Frances Wedekind, a pediatric oncologist and assistant research physician with the Pediatric Oncology Branch at NCI, explains how the Childhood Cancer Data Initiative follows children, teens and young adults for many years to collect key information about their cancer diagnosis, imaging and treatments.

She added that the initiative along with the Rare Cancer Data Registry are critical to helping researchers access and analyze the clinical and genomic data that could potentially lead to more effective targeted therapies and new drug developments that could improve the standards of care for young patients.