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The Natural History Study of Rare Solid Tumors has enrolled over 670 study participants as of October 2024. The study, which opened for enrollment in January 2019, enrolls people who have been diagnosed with a rare solid tumor and collects medical records, imaging data, available biospecimen samples, and detailed questionnaire and survey information in an effort to learn more about how rare solid tumors form and grow. View the enrollment distribution by age and by tumor diagnosis below.
Join the National Cancer Institute (NCI)’s Childhood Cancer Data Initiative (CCDI) on Tuesday, November 12, 2024, from 2:00–3:00 p.m. ET, for an engaging live demo and panel discussion on the National Childhood Cancer Registry (NCCR) Data Platform, a new resource that’s part of the CCDI Data Ecosystem.
The NCCR Data Platform is the nation’s first data-sharing resource to link childhood, adolescent, and young adult (AYA) records across population-based cancer registries and real-world data partners. To request access to the platform, visit the NCCR Data Platform website.
This virtual event is free and open to the public, though registration is required to get the event link. Learn more and register for the event here.
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MyPART and NCI-CONNECT Host AYA and Primary CNS Tumor Virtual Workshop: Leaders from the NCI Center for Cancer Research (CCR) led a virtual public workshop on October 30th focused on the unmet needs and opportunities for improvement around adolescent and young adult (AYA) central nervous system (CNS) tumors. Focus areas included clinical trial access, support resources, and survivorship. MyPART and NCI-CONNECT are rare tumor patient-engagement programs coordinated through the NCI CCR. While MyPART focuses on children, teens, and young adults with rare solid tumors, NCI-CONNECT focuses on adults with CNS tumors. This virtual workshop was an opportunity for both programs to collaborate and prioritize research and care objectives for young people with CNS tumors.
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MyPART at the NORD Breakthrough Summit: Dr. Christina Vivelo, Communications Manager for MyPART, participated in a “Lunch and Learn” panel discussion at the National Organization for Rare Disorders (NORD) Breakthrough Summit on October 21st in Washington, DC. The event, hosted by NORD's Rare Cancer Coalition, included rare cancer stakeholders from the US FDA and the pharmaceutical industry.
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