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MyPART’s Natural History Study of Rare Solid Tumors follows people who have been diagnosed with a rare solid tumor over time to learn more about how rare solid tumors grow and develop. Since the study opened in January 2019, over 600 participants have enrolled from all over the US and internationally. The study collects biospecimens, clinical data, and patient-reported outcomes to gain a deeper understanding of these tumors and how they impact patients’ lives. View the distribution of study participants by diagnosis and by age below.
The Natural History Study of Rare Solid Tumors has opened study site locations at Oregon Health & Science University (OHSU) and Baylor University! More information will be available soon!
MyPART collaborator, Dr. Andrew Blakely, received the honor of being named “Clinician of the Year” at this year’s Life Fest, a biennial event held by The Life Raft Group. Dr. Blakely is a surgical oncologist in NCI’s Center for Cancer Research Surgical Oncology Program and specializes in gastrointestinal stromal tumors (GISTs), The Life Raft Group’s tumor of focus. Life Fest is an opportunity for The Life Raft Group to honor those who have served the GIST community with excellence. This year, Life Fest was held in San José, California. In addition to honoring Dr. Blakely, Life Fest also honored OHSU Knight Cancer Center as a GIST Center of Excellence.
The Life Raft Group has been a longtime partner of the NCI CCR Pediatric Oncology Branch and MyPART in GIST research and care for people affected by GIST. The Pediatric and Wild-type GIST Clinic, now named the NIH SDH and Ultra-Rare GIST Clinic, was developed in partnership with The Life Raft Group and serves as a model for other rare tumor clinics held at NIH to serve the rare solid tumor community. Learn more about the rare tumor clinics held at NIH here.
Tune in for the Childhood Cancer Data Initiative’s (CCDI) webinar, CCDI Federated Data: Enhancing Data Discoverability, on Tuesday, August 13, 2024, from 1:00–2:00 pm ET. Join representative members of CCDI’s data federation and hear about a new advancement for querying genomic, clinical, imaging, and biospecimen data.
What you’ll learn:
• how to access the application programming interface (API), including the OpenAPI Specification and materials to support API development
• harmonized data elements available through the API
• use cases for leveraging the API
• the future direction of data federation
This virtual event is free and open to the public, though registration is required to get the event link. Register here.
Learn more about CCDI events and access past webinar recordings by visiting their Events & Webinars page.
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