This year, Gastrointestinal Stromal Tumor (GIST) Awareness Day is on July 13. We spoke with Carolyn Tordella of the non-profit organization The Life Raft Group, based in the United States, about the rare cancer GIST, the vision of the group, and its plans for the awareness events.
First of all, please tell us about The Life Raft Group as well as its aims and mission.
The mission of The Life Raft Group is to enhance survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts. The Life Raft Group vision is to champion patient-powered science and drastically increase long-term survivorship for all cancer patients.
To accomplish this, we rely on four key pillars:
- Leverage the patient perspective to drive innovative solutions in cancer research
- Educate and empower patients to take a larger role in their care
- Accelerate research outcomes through collaborative efforts
- Increase access to effective treatments worldwide
The Life Raft Group started in 2000, when a handful of patients in the early Gleevec trials began sharing their experiences online. Many patients had been misdiagnosed with leiomyosarcoma and were just now finding out they had an entirely different cancer – gastrointestinal stromal tumor, or GIST. Sharing their stories and experiences online helped them in a variety of ways, including gaining much-needed support while facing a rare disease and managing the side-effects of a new drug. In the next two years, this group formed a newsletter and Web site to share information with an even wider audience, before formally incorporating in June 2002. Over the years, The Life Raft Group has grown immensely, meeting the challenges facing GIST patients and caregivers and the research community every step of the way.
What is particularly demanding about GISTs in adolescents and young adults (AYA)?
Adolescents and young adults can present with rarer subsets of GIST that can be non-responsive to drug treatments that may be used in mutations that occur most often in older adults. Cases in adolescents and young adults comprise less than 15% of all GIST cases per year and can include diagnosis of cancer syndromes such as Carney Stratakis Syndrome and Carney Triad. These cases can be indolent (though there are exceptions), hereditary or somatic, and there are few treatment options beyond surgery, and also not many clinical trials are available for such patients. The greatest challenges may be coping with extensive surgery and the side-effects from those surgeries and the challenges of the lack of treatments and clinical trials.
In your opinion, what needs to be changed to pay heed to the unmet needs of patients with GISTs?
Our goal is to establish mutational testing for our patients as a protocol for all GIST patients. Our Biomarker Testing campaign for 2021 is to bring awareness of the importance of mutational (biomarker) testing to patients and oncologists. Uncovering the driving force behind each individual’s tumors is not just important, it is critical. Biomarker testing is an opportunity to improve and optimize treatment – possibly avoiding unnecessary treatments and getting to the right treatment sooner. Currently, biomarker testing rates in the gastrointestinal stromal tumor patient population are relatively poor – only about 26.7% of patients have had testing done. The Life Raft Group Patient Registry, which is a group of extremely proactive patients, notes only about 53% of patients are aware of their mutation.
What are you planning for GIST Awareness Day on July 13? Why are awareness days and campaigns important?
Despite all the work done by our amazing members and friends to date there is still a huge lack of education and awareness that exists within the medical community and general public about GIST. The ultimate goal of GIST Awareness Day is to bring so much attention to GIST that knowing what it is will no longer be so “rare”. GIST Awareness Day serves as the yearly pinnacle of our education, awareness and advocacy efforts and provides those outside the GIST community a chance to learn about and lend their support to this important cause.
hashtags: #GISTAwarenessDay #TimeToGetTested #ItsTime
Please let us know more about the GIST Patient Registry, GIST Collaborative Tissue Bank, the GIST Trials Database, and Project Surveillance, as featured on your homepage.
GIST Patient Registry
The GIST Patient Registry is a natural history study that is updated and curated regularly from the date of diagnosis throughout the patient’s lifetime.
The GIST Patient Registry is an ongoing research study where GIST patients and caregivers from all over the world volunteer their information regarding their GIST treatment. This information is used to understand the natural history of GIST, treatment outcomes, and to help accelerate research with our Real World Evidence Data.
Since The Life Raft Group is not limited by the design of traditional clinical trials, we have significantly increased flexibility in the areas that we can examine. Because our GIST Patient Registry is only driven by patient-reported data, we are better at following patients for prolonged periods of time and across institutional boundaries causing a significant impact in reaching and understanding real-life issues that come up daily in the patient’s journey. This strong connection allows us to track traits of the disease that are of concern to the GIST community. The data collected allows us to educate/advocate patients in the decision making and treatment options for their disease.
Perhaps more importantly, by moving beyond the role of patient advocates to become patient scientists, we are changing the medical research environment. We are claiming a voice at the decision making table and influencing what research is being done and how it is being conducted.
GIST Collaborative Tissue Bank
The GIST Collaborative Tissue Bank brings together GIST researchers and GIST patients in a unique partnership. For patients, it’s an opportunity to reach leading researchers with one tissue donation. For researchers, it’s an opportunity to access tissue linked to GIST clinical histories and to share valuable tissue and critical data. This collaboration maximizes the value of donated tissue and research time.
GIST Clinical Trials
A data-driven website to help patients navigate GIST clinical trials. The Life Raft Group and its volunteers have developed GIST Trials, a free, easy-to-use clinical trial database designed to provide patients, caregivers, and members of the public current information about clinical research studies relevant to GIST. It contains information about clinical studies being conducted throughout the United States and in many countries throughout the world.
The Project Surveillance Group is a global collaboration of 40+ physicians, clinicians, researchers, surgeons, and other medical professionals who communicate digitally to discuss, brainstorm, and work through difficult issues in GIST treatment. This group aims to close critical time gaps in research and practice, by forming a collaborative platform for GIST experts to share real-world, real-time observations in a timely, actionable manner. Enhanced by the patient-provided data from The Life Raft Group’s Patient Registry, the project combines patient and clinician brainpower.
Many thanks for your time and for the interview.