The Life Raft Group is currently conducting a tissue testing initiative for GIST patients to receive FREE Next-Generation Sequencing (NGS) Testing!
What is NGS?
NGS is used for DNA and RNA sequencing and detection of variants/mutations. Unlike a basic mutational test that looks for mutations in KIT/PDGFRA, NGS sequences hundreds of genes and whole genomes simultaneously and in a short period of time. This test helps identify multiple mutations that can have an impact on the tumors and disease. The results can help healthcare providers match patients with the appropriate therapeutic treatment options or clinical trials which can be a turning point in the response journey of a GIST patient.
Since NGS is more advanced, the cost for this mutational testing can be very high. Considering this, The Life Raft Group is collaborating with Tempus Labs and Bayer Pharmaceuticals to provide GIST patients, who fit a certain criteria, to have this testing performed at no cost.
Tempus Labs
After extensive research on which lab to collaborate with for this initiative, the LRG decided on Tempus Labs. Tempus Labs is a leading and reliable laboratory with cutting edge technology to provide patients with precise results and also provide insights to help identify treatment options specifically tailored to the patients. Please note: to further protect patient privacy, no personal or identifying information of the patient is shared with the lab. Each patient who participates in the initiative is given an LRG #.
This collaboration is strictly for the clinical benefit of the patient specifically for understanding which mutation is driving the patient’s GIST, assisting in the decision making of the treatment plan, offering new opportunities/trials and to better increase awareness of the importance of mutational testing for GIST patients at the time of diagnosis. This is something we are very passionate about!
The Tissue Testing Process:
Patient joins the LRG GIST Patient Registry.- Patient expresses interest in the initiative and is eligible. They then complete the two consent forms provided by the LRG Data Management & Research team (DMR).
- Patients will be provided their LRG # when consent forms are sent to ensure that personal information is not used.
- Patient is then advised to let their treating oncologist know that they are receiving NGS testing through the LRG and that a member of the DMR team will be reaching out to their doctor with a requisition form to sign (Note: Without a doctor’s signature, the process cannot move forward.)
- Once the consent forms are signed and submitted to the LRG, the DMR team completes all necessary reach-outs to patient’s doctor (to send the above mentioned requisition form) and the pathology department to request the tissue sample.
- The LRG sends patient’s tissue sample(s) and requisition form to Tempus Lab for analysis.
- Results are received within 3-5 weeks and a copy of those results are sent directly to the treating oncologist and patient.
The eligibility requirements are as follows:
- Patient must be or become part of the Life Raft Group GIST Patient Registry.
- Patient must be a US resident.
- Patient must have a treating oncologist (The oncologist will be required to sign a requisition form provided by the LRG)
- Patient must have not had any type of testing (basic mutational testing or advanced testing)
- Patients with wildtype KIT or PDGFRA results from previous basic mutational testing are eligible to participate.
To learn more about our tissue initiative: https://staging.liferaftgroup.org/2021/10/tissue-testing-project/
Download the PDF detailing the tissue testing protocol: https://staging.liferaftgroup.org/wp-content/uploads/2021/10/Tissue-Project-Info-Sheet.pdf
If any doctor, pathology department, or patient has any questions, please direct them towards The Life Raft Group’s Data Management & Research Department at patientregistrydepartment@liferaftgroup.org
