UPDATE ON MyPART NETWORK and the collaboration with the Count Me In project – How it will all be coming together on the Count Me In project launches:
Two Clinical Studies for LMS Patients: The NCI MyPART Network’s Natural History Study of Rare Solid Tumors and the Broad Institute’s Count Me In Project
To Help LMS Patients, the NLMSF joined forces with the NCI My Pediatric and Adult Rare Tumor (MyPART) Network to collaborate on data collection efforts to enhance future research initiatives for LMS. MyPART focuses on rare solid tumors in children, teens, and young adults. The MyPART Natural History Study of Rare Solid Tumors studies patients with rare tumors, including LMS, by collecting a saliva sample, medical records, and tumor tissue available from previous biopsies or surgeries. Participants fill out forms and surveys about their family medical history and aspects of their quality of life. Some patients may be invited to the NIH Clinical Center and have the opportunity to meet with experts and receive treatment recommendations.
The more LMS patients reach out the NCI, the larger the “voice at the table” will be for LMS patients, which may allow for a greater NCI research focus on LMS.
Please note: The MyPART Network Natural History Study of Rare Solid Tumors prioritizes enrollment for patients diagnosed before the age of 40. While patients of any age can participate in this study, MyPART will focus on enrolling patients diagnosed before the age of 40 before seeking to enroll older patients.
For more information on the NCI’s MyPart Network Initiative:
For more Natural History Study information by the NIH: https://www.cancer.gov/pediatric-adult-rare-tumor/participate/natural-history and
For Patients: Contact MyPart to participate in the program to help advance research efforts through advancing study and understanding of LMS tumors: https://www.cancer.gov/pediatric-adult-rare-tumor/about/contact
For general questions regarding participation or for more information about MyPART for the LMS Community, please contact:
Annie Achee at firstname.lastname@example.org or (303) 808-3437