Count Me In Gives LMS Patients a Way to Impact Future Treatments
By Laura Penny
11/29/21
YOU can help accelerate new treatments for LMS!
In early 2022, we will have a greater impact in our future through a project called Count Me In. This non-profit organization will collect samples and information from anyone who has ever had LMS in the United States and Canada—with appropriate privacy protections—and release the anonymous data publicly so that researchers can share their ideas on new, more effective ways to treat LMS.
All you do is sign a consent and the rest is taken care of!
LMSDR is hosting a Zoom session to learn more about the project and meet the project staff!
LMS Count Me In Project
Thursday, December 9th at 4 p.m. Pacific / 6 p.m. Central / 7 p.m. ET (U.S.). Register here
Count Me In started in 2015 as a project run by the Broad Institute and Dana-Farber Cancer Institute (which has a sarcoma center) for metastatic breast cancer patients.
Here is what The Leiomyosarcoma Count Me In project will do:
Ask LMS patients in the United States and Canada to submit samples of their tumors so they can undergo molecular and genomic research at the Broad Institute.
Use this research to produce a large set of data that can be provided to researchers. Because LMS is so rare, this data will first help researchers to gain a better understanding of the disease—then expanded knowledge to work on better treatments.
Provide you information about your individual data AT NO COST (available for patients who live in the United States, except New York; not available for Canadians).
According to Taylor Custer of Count Me In, “We’ve been working closely with a committee of 10 LMS patients and caregivers to provide input and feedback on the project design. As the project launches and gets going, we will have more opportunities for members of the community to get involved with providing feedback and input on the project and we will share those as they’re available. After we launch the project in early 2022, participants can provide questions or comments on their experience in the project through surveys and reaching out to the team.”
Patients will have two chances to learn more about their DNA from the project, one for tumor DNA and one for germline or normal DNA.
“If a participant elects during the consent process to share archive tissue samples with the project and the tumor sample is successfully sequenced, we can share information from the genomic sequencing of the tumor sample back with the participant. Participants can choose whether or not to receive this information about their tumor sample during the consent process. The information about a participant’s tumor is intended to highlight how participant sample(s) are contributing to research and will not have implications for their treatment or prognosis,” Cusher explained. However, regulatory restrictions prohibit the sharing of results with participants in New York and Canada.
“The project is also partnering with Invitae in order to sequence and share information on germline DNA (or ‘normal’ DNA) from saliva samples. During the project, participants will be able to decide if they would like to provide an additional saliva sample to learn more about their normal DNA and speak with a genetic counselor to understand these results,” Cusher added. “If a participant chooses not to participate in this process, the data will not be shared with Invitae. This process is not available for participants in Canada, as Invitae is not licensed to provide genetic counseling services there.”
More information on the Count Me In model and other projects can be found at joincountmein.org.
To make sure you are notified about when you can sign up, go to https://joincountmein.org/lms.
Need more information? The Count Me In staff welcomes questions and comments through email at info@lmsproject.org.