New ‘GIST Regional Patient Registry Latin America’
Patient registries are organized data platforms that use observational research methods to gather data for scientific, clinical or policy purposes.
The Life Raft Group is pleased to announce the official establishment of our Regional Patient Registry, a partnership with Latin America, which will collect medical history and treatment information from more than 600 GIST patients who are represented by Fundación GIST Mexico, Fundación GIST Chile, and Pontificia Universidad Católica de Chile.
Salud con Datos (Health with Data) was formed in 2016. This initiative’s main goal is to strengthen its efforts in Latin America as it focuses on harnessing data to improve GIST patient outcomes.
Through this partnership, representatives from Latin American countries will be able to enter GIST clinical data from patients into the LRG’s Patient Registry. This de-identified information will then be used for research to improve diagnoses, treatments, and quality of life for patients. Latin America needs collaborative initiatives like this to represent patient voices to regulators.
The LRG will analzye the de-identified data to identify gaps in care and to compile relevant information to improve knowledge and awareness about GIST, ultimately sharing their findings with patients, advocacy groups, health care professionals, and researchers.
Rodrigo Salas, President of Fundación GIST México and member of the LRG Board of Directors states:
“Participating in a regional patient registry through Salud con Datos is an excellent opportunity that has allowed us to develop cross collaborations with the medical community in order to advocate with our local authorities for better diagnoses and treatment for our patients.”
Many patients in Mexico lack access to GIST treatment and one of the goals of this Regional Registry is to collect relevant data to demonstrate to policy makers the correlation among therapeutic access and overall survival.
Rodrigo commented, “With real world evidence, we obtain reliable information regarding costs of treatments for GIST patients. This will influence authorities to include GIST in the public health coverage. We also have showed our government the importance of an epidemiology surveillance system and have promoted the development of a local cancer registry in Monterrey, México.”
Finally, we understand the only way to move GIST research forward is to work collectively.
Rodrigo said, “Research and advocacy together are great tools to have better outcomes for our patients.”
Piga Fernández, Executive. Director of Fundación GIST Chile and Global Consultant at The Life Raft Group as well as a GIST patient, shared:
“Salud con Datos has been a great project for Fundación GIST Chile and a great opportunity. On one hand, the data has given us the tools we needed to advocate for GIST patients’ needs, and on the other hand it has given us the opportunity to show nationally and internationally the work we have done collaborating with the LRG, Fundación GIST México, as well as working together with clinicians, academia, and scientific societies in Chile.”
Mutational testing is key for treatment optimization for GIST patients. As in the U.S., Latin American patients do not usually get mutational testing prior to starting treatment. Data from the LRG Patient Registry has shown that patients who know their mutational status have a higher overall survival than patients that do not.
Piga adds, “From the advocate´s perspective, this regional registry will provide us with the Real-World Data we need to make the needs of GIST patients visible, such as the importance of a timely diagnosis and effective treatment patterns. It will give us enough information to advocate for access to treatments and diagnostic tests such as mutational tests.”
Our aim is not only to educate decision makers on the needs of GIST, but also patients. We want to encourage all patients from all over the world to feel empowered with regards to their GIST.
Piga said, “The clinical de-identified data from this regional registry will give us enough information to disseminate knowledge to create awareness of the disease.”
The Support Team in Oncology Research and Medicine (STORM) within Pontificia Universidad Católica de Chile (PUC), is a key player and partner in this collaboration.
Oncologist Marcelo Garrido specializes in GIST and Neuroendocrine cancer and is an Assistant Professor at PUC School of Medicine. Matías Muñoz is the data entry and data analyst of STORM, with many years of experience in data analysis and nuclear medical technology.
Garrido and Muñoz shared: “Since 2016, our oncology research team has been working cooperatively with Fundación GIST Chile to actively refer patients to specialists, advocating for patients during their diagnoses and therapies; as well as providing them with information, tools, and resources to make better decisions and face their disease the best they can. It’s been an amazing opportunity to work with highly specialized professionals and patient advocacy groups through academic collaborations to research this field and modernize GIST patient care, all while benefiting patients which is our shared goal within this partnership.”
GIST is so rare that collaboration is crucial to understand the clinical patterns and traits of the disease among all GIST patients. Real World Data (RWD) will help us observe this in a broader spectrum.
Dr. Marcelo Garrido and Matías Muñoz said: “Working together as a part of Salud con Datos by contributing real-world data for a regional patient registry is exciting, expanding the possibilities of researchers and patients as well as to keep progressing step by step to what we all desire: overcoming GIST once and for all.”
RWD from this partnership will help to create a patient profiling study, where many important factors can be identified and compared among countries. The objective of this international collaboration is to study and analyze the epidemiological factors of GIST among patients across the world. We envision that the outcome of this international collaboration will change health policies, assist with patient advocacy, and increase patient survival. We look forward to the outcomes this partnership will bring to the GIST community and the enormous impact on all GIST patients, despite the location of residence of patients.
Moving forward, we aim to expand participation and consolidate more GIST knowledge by inviting other countries and stakeholders to join us to improve overall patient survival and access to treatment in Latin America and globally.
Fundación GIST Mexico – A nonprofit founded by Rodrigo Salas for GIST patients. Fundación GIST México was born in memory of his wife, Cordelia Gutiérrez de Salas, who was diagnosed with GIST in 2000. Our mission is to promote the survival of GIST patients. Learn more: http://fundaciongist.org/
Fundación GIST Chile – A nonprofit founded in 2015 by GIST patient Piga Fernández. Their mission is to improve the quality of life and survival of people with gastrointestinal cancers, respecting their dignity and autonomy, in the phases of prevention, diagnosis and treatment, through accompaniment, education, information, support to research and advocacy. Learn more: https://gist.cl/
Pontificia Universidad Católica de Chile, STORM – The mission of the Support Team in Oncology Research and Medicine is to generate, manage, improve and facilitate the development of basic and clinical research of excellence in the area of medical oncology. Learn more: https://www.uc.cl/