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The MyPART Natural History Study of Rare Solid Tumors opened for enrollment in January 2019. The study is open to anyone who has been diagnosed with a rare solid tumor, regardless of age, and aims to learn more about why rare tumors form and how they grow and develop over time. Since opening in 2019, the study has enrolled almost 500 people and includes over 75 different rare tumor diagnoses. Diagnoses that represent one or two participants are labelled N=1 and N=2 respectively and make up about 10% of all study participants. View the graphs below to see the detailed breakdown of study participants by diagnosis and by age. Learn more about the study, the data we collect, and how to participate here.
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MyPART forms partnerships with cancer advocacy organizations to help advance our mission of engaging patients and families in research by raising awareness and and providing education about the tumors we study. To date, the MyPART Network includes 25 advocacy partners. Some organizations advocate for very rare tumors and others provide broader cancer support programs. Each organization has developed its own community with unique priorities, but all of MyPART’s advocacy partners share the common goal of advocating for improved care and research for rare cancers. Together, MyPART’s advocacy partners make up a diverse group with a shared interest in improving the lives of people with cancer and advancing rare tumor research. Learn more about the role of advocacy in MyPART here.
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New on the MyPART website: chondrosarcoma web page. Chondrosarcoma is a type of rare bone tumor that forms from cells that make too much cartilage. View the new MyPART web page to learn more about chondrosarcoma here.
FDA approves atezolizumab for ASPS patients 2 years of age and older. The US Food and Drug Administration (FDA) announced on December 9th, 2022, that atezolizumab is now approved for patients 2 years and older with alveolar soft part sarcoma that is metastatic or not able to be removed by surgery. In a study of 49 pediatric and adult patients, the overall response rate was 24%. Learn more here.
New research collaboration to develop biomarkers for early detection of cancer in patients with neurofibromatosis type 1 (NF1). NF1 is a genetic condition that occurs in about 1 in 3,000 births and can lead to the development of nerve tumors throughout the body. In 8-13% of NF1 patients, a rare sarcoma called malignant peripheral nerve sheath tumor (MPNST) may form. MPNST currently has no cure. The collaboration between Pediatric Oncology Branch (POB) Lasker Clinical Researcher Dr. Jack Shern and Washington University physician scientists Dr. Angela C. Hirbe and Dr. Aadel Chaudhuri, will be aimed at developing a blood test that may offer NF1 patients the ability to detect cancer earlier, which may improve treatment outcomes. Learn more about this collaboration here. Learn more about MPNST here.
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Feb 6th, 2023: International Chondrosarcoma Awareness Day. February 6th was designated International Chondrosarcoma Awareness Day by the Chondrosarcoma Foundation in honor of Shayna Elise Kramer, who passed away from this rare tumor in 2019. People are asked to post photos of themselves wearing yellow ribbons on social media with the hashtag “#cswecare” to raise awareness about chondrosarcoma and share information and resources. Learn more about chondrosarcoma here.
Feb 23rd, 2023: “Precision Tracking of Cancer Prognosis and Progression” Webinar, hosted by MyPART partners, TargetCancer Foundation, Fibrolamellar Cancer Foundation, and Angiosarcoma Awareness Inc. This webinar is the third webinar out of four in a series exploring how precision medicine is being applied to rare cancers.
Feb 28th, 2023: NIH Rare Disease Day. This annual event hosted by the National Center for Advancing Translational Sciences and the NIH Clinical Center raises awareness and shares the latest in rare disease research. This year, NIH Rare Disease Day will include a session on cancer in adolescents and young adults. The event will be hybrid, with participants having the option to attend in person or watch the live-stream here. Register and learn more about the event here.
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