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The Natural History Study of Rare Solid Tumors, which opened for enrollment in January 2019, has enrolled over 600 study participants to date (598 participants as of Feb 1st)! The study is a longitudinal, observational study of people with rare solid tumors and their family members. The study is open to anyone who has been diagnosed with a rare solid tumor and does not affect a person’s current medical treatment. The largest cohorts in the study include chordoma, gastrointestinal stromal tumor (GIST), neuroendocrine tumor, and adrenocortical carcinoma. View the distribution of 598 participants by rare tumor diagnoses and by age below.
Rare Disease Day at NIH was held on February 29th and welcomed patients, families, advocates, researchers, clinicians, and other rare disease research stakeholders to the NIH campus in Bethesda, Maryland. The event was held in-person with an option to tune in virtually. Organized each year by the National Center for Advancing Translational Sciences (NCATS), the day-long symposium features patient stories and the latest advancements in rare disease research. Common themes throughout the day included the necessity of patient-centered research, the potential for gene therapies, and the use of AI in reducing the diagnostic odyssey for patients.
Learn more about Rare Disease Day at NIH here and see highlights from the event on “X” social media using the hashtag #RDDNIH.
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Join the National Cancer Institute’s Childhood Cancer Data Initiative (CCDI) on Monday, March 18, from 12 p.m. to 1 p.m. ET for its first Community Forum of 2024! Community Forums are part of CCDI’s ongoing webinar series and provide an open space for discussion and insights. This event will cover topics aimed at advancing our understanding of childhood cancer and accelerating research efforts. Highlights include:
- Expansion of the Molecular Characterization Initiative
- Update on the Coordinated Pediatric and Young Adult Rare Cancer Initiative and collaboration with the European Union
- Outcomes from February’s Genomic Harmonization Task Force meeting
- Highlights of CCDI-funded project successes
Beyond providing important CCDI updates, this forum looks for YOUR active input. Contribute to the conversation by sharing your questions and feedback during their dedicated Q&A session. Your engagement is crucial and can help shape the future of CCDI. Register for the CCDI March Community Forum here.
CCDI webinars are free and open to the public, though registration is required to receive the event link. For more information on CCDI events, including past event recordings, please visit the CCDI Events and Webinars page. Also, explore CCDI’S events registration page, events.cancer.gov, to conveniently enroll in any available CCDI events.
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Dr. Jaydira Del Rivero, an expert in neuroendocrine tumors and MyPART physician, hosted a virtual symposium on adrenocortical carcinoma (ACC) on February 20th and 27th. The virtual sessions brought together clinicians, researchers, patients, family members, and advocates to explore the latest in ACC research and care.
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Dr. Lori Wiener, head of the Pediatric Oncology Branch’s Psychosocial Support and Research Program, was invited to participate in the first meeting of the Together by St. Jude Advisory Board on Feb 1-2 at NIH (photo: right, above). Dr. Wiener convened with childhood cancer colleagues from around the globe to provide expertise and guidance to improve upon this online resource provided by St. Jude Children’s Research Hospital.
- Sarcoma research organization and MyPART advocacy partner SARC (Sarcoma Alliance for Research through Collaboration) will launch a global sarcoma centers registry in Spring 2024 to aid in patient decisions and serve as a tool for the sarcoma research community. Sarcoma centers must meet qualifying criteria to participate in data contribution. Learn more about the Sarcoma Centers Registry here.
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