TWO CLINICAL STUDIES THAT RELY ON PATIENT INVOLVEMENT TO MAKE THE DIFFERENCE FOR PRECISION LMS RESEARCH ADVANCEMENT:
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.
LMS patients also have the opportunity to participate in the Broad Institute’s Count Me In project. The Count Me In project also collects a saliva sample, medical records, and tumor tissue available from previous biopsies or surgeries and will be open to all LMS patients, regardless of age, in the USA and Canada once launched in the later part of 2021. This study does not see patients in the clinic.
Both studies are valuable and important patient-driven initiatives. Your involvement in contributing natural history information is key to the success of building an LMS Community within the NCI’s MyPART Network and the Count Me In Project.
The NCI MyPART Network will be working together with the Broad’s Count Me In Project to ensure data from LMS patients in both studies is shared with the research community. LMS patients will want to become acquainted with both initiatives. Both studies will collaborate and share data collected from LMS patients, which may accelerate research on LMS and may have long term benefits for the LMS community.