The MyPART Minute

July 2024

Spotlight on Sarcoma

July is Sarcoma Awareness Month, a time to focus on sharing resources and increasing awareness of this collection of more than 80 different types of rare cancers that grow in the bone and other soft tissues throughout the body, including fat, cartilage, blood vessels, and other connective tissues. The MyPART Network and the NCI Center for Cancer Research’s Pediatric Oncology Branch have a strong interest in pediatric sarcomas and have a variety of focused research efforts dedicated to finding effective treatments for these rare cancers. At least a third of the participants enrolled on MyPART’s Natural History Study of Rare Solid Tumors have received a sarcoma diagnosis. And half of MyPART’s advocacy partners either serve a particular sarcoma community or work more broadly in the pan-sarcoma space. You can find a list of MyPART advocacy partners with links to their websites here.

Update From the Sarcoma Coalition

The Sarcoma Coalition was established in 2018 and currently includes 34 sarcoma advocacy organizations from across the United States, many of which are MyPART advocacy partners. The Coalition seeks to advocate for the greater sarcoma community through awareness campaigns and research initiatives. The Coalition is also a member of the European Sarcoma Patient Advocacy Global Network. Recent Sarcoma Coalition activities include a Listen and Learn Series, where experts are invited to discuss topics in sarcoma treatment and care. Patient communities are invited to attend the presentations, and all programs are recorded and can be accessed from the Coalition’s website here. The Coalition continues to promote its “Golf Ball Project,” an awareness campaign on the red flags associated with lumps of any size, aimed at informing the general public and medical community about sarcoma risk. Learn more about the Sarcoma Coalition and their activities here. 

Update From SARC

The Sarcoma Alliance for Research through Collaboration (SARC) is unique among MyPART advocacy partners in that it is a physician-founded non-profit organization focused on developing and supporting sarcoma research. SARC supports multi-center clinical trials testing potential sarcoma therapies and also provides funding for the career development of investigators interested in pursuing sarcoma research.

As tumor specific expertise is essential for treating rare cancers like sarcomas, SARC has launched two new clinician/patient-facing initiatives:

• Sarcoma Centers Registry: This tool (accessed here) provides patients and clinicians annotated access to specialized programs with expertise in the diagnosis and treatment of sarcoma. To be added to the Sarcoma Centers Registry, interested pediatric and/or adult sarcoma programs from around the world are invited to fill out a brief (about five minute) screening application for your institution here.
• SARC Multidisciplinary Tumor Board (SMTB): a monthly forum for treating physicians from anywhere in the world to present challenging sarcoma cases to a team of experts from a wide range of specialties for in-depth, evidence-based discussion of tumor diagnosis and management, without geographic or cost barriers for the presenting physicians or their patients. More information about how to submit a case can be found here. 

NIH GIST Clinic Held June 12-13, 2024

The NIH Succinate Dehydrogenase (SDH)-Deficient and Ultra Rare GIST Clinic, started in 2008, is the oldest rare tumor specialty clinic held at the NIH Clinical Center. SDH-deficient GIST, or gastrointestinal stromal tumor, is a rare cancer that starts in the digestive tract. On June 12-13, 2024, MyPART hosted the 21st NIH SDH-Deficient and Ultra Rare GIST Clinic. Seventeen specialists (seven from NIH and ten from the extramural community) convened to provide their expertise to the six patients who participated in this latest clinic (see photo of extramural experts with NIH staff and experts at the clinic.) The Life Raft Group, a MyPART advocacy partner that has been involved with this clinic since its inception, hosted a reception for patients, families, and specialists at The Children’s Inn at NIH and also hosted a dinner at a local restaurant. You can learn more about MyPART rare tumor specialty clinics here.

Upcoming Events

July 9: As part of their ongoing webinar series, the Childhood Cancer Data Initiative (CCDI) will host a webinar on Tuesday, July 9, 2024, from 1:00–2:00 pm EDT. Tune in and learn about how to enhance interoperability with data standards, with an emphasis on the:  National Childhood Cancer Registry (NCCR) Childhood Cancer-Data Integration for Research, Education, Care, and Clinical Trials (CC-DIRECT) Development of pediatric content within the HemOnc.org ontology standard Creation of the minimal Common Oncology Data Elements (mCODE) pediatrics extension This virtual event is free and open to the public, though registration is required to get the event link. You can register here. Learn more about CCDI events and access past webinar recordings by visiting the CCDI Events & Webinars page. If you are an individual with a disability who needs reasonable accommodations to participate in this event, please email CCDIevents@mail.nih.gov as soon as possible. July 13: July 13 is GIST Awareness Day! MyPART studies GIST as part of its Natural History Study of Rare Solid Tumors and also partners with The Life Raft Group and with SDH-Deficient Cancer Research Advocates, two organizations dedicated to helping those facing a GIST diagnosis. July 15: July 15 is Leiomyosarcoma Awareness Day! People diagnosed with leiomyosarcoma are also eligible to enroll in MyPART’s Natural History Study of Rare Solid Tumors. MyPART partners with the National Leiomyosarcoma Foundation and the LeiomyoSarcoma Support & Direct Research Foundation, two advocacy organizations helping those facing a leiomyosarcoma diagnosis. July 15: Funding opportunity: the Department of Defense invites Letters of Intent for the Rare Cancers Research Program’s (RCRP) Concept Awards, which are due by July 15. You can find the program announcement for the Concept Awards, as well as information on how to apply, here.

Learn more about MyPART at cancer.gov/mypart
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