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Enrollment Update:
As of September 23rd, 2020, 207 individuals have been enrolled in the Natural History Study of Rare Solid Tumors. The age distribution, male to female ratio, and rare tumor diagnosis statistics are shown below.
 Our Network by the Numbers:
Dr. John Glod is the Clinical Director for the NCI CCR Pediatric Oncology Branch, and one of the doctors on the MyPART Team. Dr. Glod grew up in Pennsylvania and attended medical school in Denver. He trained in pediatric oncology in Cincinnati and the NIH, conducting research focused on early phase clinical trials and rare pediatric solid tumors. When Dr. Glod first joined the NIH, he focused primarily on patients with NF-1, but over time, became more involved with patients with other rare solid tumors. He works with several specific groups of patients on the Natural History Study of Rare Solid Tumors, including patients with MEN2B, medullary thyroid cancer (MTC), and SDH-deficient GIST. He also participates in the rare tumor clinics for patients with MTC and GIST. Dr. Glod explains about MyPART, “The best parts of the job are developing relationships with the amazing patients who participate in MyPART and their families and working with the incredible MyPART team to try to learn more about rare cancers so that we can provide better care.” Further, the COVID-19 pandemic hasn’t slowed the team down! Dr. Glod says, “the resilience of the team during the pandemic has really been impressive. I feel like we haven’t missed a beat.” Read more about Dr. Glod and his research here.
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Cure Alveolar Soft Part Sarcoma International (iCureASPS) was established in 2006 to bring patients with Alveolar Soft Part Sarcoma (ASPS) together and provide them with information about this rare tumor. iCureASPS supports ASPS research and connects researchers with patient-donated tumor tissue. Through the ASPS Patient Forum platform, patients with ASPS can connect, share their experiences, and learn about available treatment options to discuss with their healthcare team. The iCureASPS website also hosts a research library with links to the most up-to-date information and publications. The reach of iCureASPS is international, connecting patients with ASPS across the world through participation in the “Team ASPS bike ride,” the Pan-Massachusetts Challenge (PMC). MyPART is pleased to partner with iCureASPS to facilitate the exchange of information on this rare tumor and to engage patients with ASPS in research.
Next Advocacy Spotlight: TargetCancer Foundation
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The NCI Clinical Trial “Testing Atezolizumab in People with Advanced Alveolar Soft Part Sarcoma” is a Phase II clinical study testing the ability of the anti-PD-L1 antibody, Atezolizumab, in treating patients with ASPS that has spread to other parts of the body and cannot be removed by surgery. The FDA granted Breakthrough Therapy Designation (BTD) for Atezolizumab based on the current results from this ongoing study. The Breakthrough Therapy Designation from the FDA facilitates and accelerates the development of a therapy aimed at treating a serious condition. To be eligible for this study, the patient must have completed any previous treatment at least one month prior to starting this study. The trial is enrolling at many sites across the US and is open to patients ages 14 years and older. Patients ages 2 and older may participate at the NIH in Bethesda, Maryland. For more information about participating at the NIH, please contact MyPART doctor, Dr. Mary Frances Wedekind Malone, at maryfrances.wedekindmalone@nih.gov. For other inquiries about this clinical trial, please contact Dr. Alice Chen, the lead investigator of this study, by phone at 800-411-1222.
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