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As of March 2022, the Natural History Study of Rare Solid Tumors has enrolled 444 study participants! The study enrolls individuals who have (or have had) a rare solid tumor and their family members and will help us learn how rare solid tumors grow and develop over time. So far, the study represents over 60 different tumor histologies. Tumor types with the highest number of participants enrolled are gastrointestinal stromal tumor, chordoma, neuroendocrine tumor, and adrenocortical carcinoma (ACC). Participants can enroll from all over the world and currently represent 6 continents, 21 countries, and 45 US states plus Washington DC and Puerto Rico. Every participant who enrolls on the study helps contribute to our understanding of rare solid tumors and has the potential to lead to the discovery of new treatments and standards of care. Learn more about MyPART’s Natural History Study of Rare Solid Tumors here. View the distribution of study participants below. Tumor types with only 1 or 2 participants enrolled are labelled “N = 1” and “N = 2” respectively.
On April 24-25th, 2022, the Fibrolamellar Cancer Foundation (FCF) hosted its first Fibrolamellar Patient & Research Summit, in Connecticut. The event brought fibrolamellar carcinoma (FLC) patients, clinicians, and researchers together to share information, perspectives, and ideas to accelerate research into this rare form of liver cancer. MyPART Executive Director, Dr. Abby Sandler, attended virtually and spoke about the MyPART Natural History Study of Rare Solid Tumors. Meeting attendees discussed research priorities and how to address research challenges, such as the integration of data from multiple natural history studies and registries. These projects often collect similar data, requiring patients to spend valuable time submitting the same information to multiple programs. MyPART aims to engage patients as partners in research, and the FCF Patient & Research Summit was an opportunity to hear directly from patients what matters most to them. Learn more about FCF here.
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- Calling all cancer researchers! The Department of Defense (DoD) Peer Reviewed Cancer Research Program and DoD Rare Cancer Research Program have upcoming application deadlines for funding opportunities:
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DoD Peer Reviewed Cancer Research Program:
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May 25: Pre-application due for the Idea Award (IA) and Impact Award (IPA)
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July 12: Letter of intent due for Behavioral Health Science Award (BHSA), Career Development Awards (CDA-FO and CDA-SO), and Translational Team Science Award (TTSA)
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August 17: Letter of intent due for Convergent Science Cancer Consortium Development Award (CSCCDA)
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DoD Rare Cancer Research Program:
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June 22: Pre-application due for Idea Development Award (IDA) and Resource and Community Development Award (RCDA)
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July 18: Pre-application due for Concept Award (CA)
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The American Psychological Association celebrated its first annual Psychology Week April 17-23. Psychosocial research is an important part of studying the impact of serious health conditions, including rare cancers, on the mental health of patients and their caregivers. The NCI CCR Pediatric Oncology Branch’s Behavioral Health Core studies the impact of chronic illness and cancer on pediatric patients and their caregivers to develop therapeutic interventions to improve mental health and quality of life. Learn more about the Behavioral Health Core here.
- On April 21st, the MyPART team held its first celebration in-person on the NIH campus in Bethesda, Maryland since the start of the COVID-19 pandemic in March 2020. We gathered to enjoy snacks, catch up with colleagues, and have a few in-person meetings!
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