Information About the Count Me In Project

Leiomyosarcoma Patients

Newly diagnosed patients are asked to consider personally helping to advance LMS research through our Foundation and the Broad Institute’s LMS Count Me In Project.

The National Leiomyosarcoma Foundation is partnering with Count Me In to inform patients about this exciting project and to encourage them to participate at NO COST. Dr. Mitchell D. Achee, physician and survivor of LMS is the Foundation’s Patient Advocacy Liaison for this program.

Count Me In’s LMS project, is a non-profit initiative, bringing patients and researchers together, to accelerate discoveries in cancer research. This LMS project is supported by a grant from the National Cancer Institute.

If patients have ever been diagnosed with LMS, they are encouraged to join the LMS project, by sharing copies of their medical records (to be de-identified), and experiences. Again, information collected and shared will always be de-identified, before being shared widely with researchers to speed discoveries.

How do Patients Participate?

By giving permission to obtain their medical records, saliva, blood, and stored tissue samples, and providing information about their personal LMS journey.

Details are found here for patients: Visit https://lmsproject.org to learn more about participation.

There is also a “For Your Physician” document on the Count Me In website, with more information about the project to share with the patient’s Oncologist/Sarcoma Specialist

We hope that proactive patients will want to participate in this excitingnew Leiomyosarcoma research initiative, which holds great promise for a better understanding of LMS, to help pave the way for novel research and future survival treatments.

The Goal of this project:The goal of the LMSproject is to transform cancer care by enabling all patients who have ever been diagnosed with leiomyosarcoma to accelerate biomedical research through sharing their cancer samples, clinical information, and their experiences. In order to achieve these goals, datasets containing linked clinical, genomic, molecular, and patient-reported data (without including any personal information) will be regularly shared with the biomedical research community through scientific repositories such as cBioPortal for Cancer Genomics and the National Cancer Institute (NCI) Genomic Data Commons.

“With courage and dedication, we can inspire
not only others, but ourselves”.
Jeff, LMS Patient Perspective
https://nlmsf.org/nlmsf-count-me-in-project-2023/

https://www.broadinstitute.org/news/count-me-launches-rare-cancer-research-project-engage-leiomyosarcoma-patients-and-families

.