Increasing the Quality and Efficiency of Clinical Trials
The mission of the Clinical Trials Transformation Initiative (CTTI) is to develop and drive the adoption of practices that will increase the quality and efficiency of clinical trials.
News from the 17th NIH Pediatric and Wildtype GIST Clinic
The NIH Pediatric and Wildtype GIST Clinic is a collaboration amongst researchers, specialists, patient advocates, patients and family members, with the goal of furthering the knowledge of SDH-deficient gastrointestinal stromal tumors (GIST) in order to develop more effective therapies.
Health Decisions Tour in Latin America
Collaboration among patient groups and working together in setting common goals is vital. Together we can have a stronger voice to achieve our participation in the decision-making on health issues.
LRG Data Leads to Change
The College of American Pathologists (CAP) released an updated version of its GIST Biopsy and Resection Cancer Protocols. Pathologists use CAP Cancer Protocols in the process of diagnosing a disease.
A ‘Clinical Trial of One’
October's LRG newsletter features artist Douglas Morgan, who found himself with a rare GIST mutation and no treatment options until an innovative oncologist and a compassionate gesture by a pharmaceutical company gave him a chance to receive a unique treatment.
Partnering with Selnet
The Life Raft Group is pleased to announce a new partnership with SELNET, a project which is creating a multidisciplinary network of European and Latin American clinical and translational specialists. This project’s goal is to improve diagnosis and clinical care in sarcomas and establish guidelines for referral policies, diagnostic methods, clinical practice guidelines among other necessary changes to current practices.
Collaborating with the NCCN FOUNDATION
The NCCN Foundation produces patient booklets that contain evidence-based disease information and important guidance to help patients formulate questions that are important to them. The Life Raft Group, a leading patient advocacy organization, is working with the Foundation to endorse these guidelines.
Teaming up with MyPART
MyPART’s mission is to engage patients as partners in rare tumor research. As an advocacy partner, our aim is to improve the outcomes of patients with rare tumors and identify and engage patients through education and the dissemination of information.
First Symposium on Personal Control of Genomic Data for Research Held at NIH
Symposium aimed to accelerate cancer research and to make more therapies available to more patients, while also improving our ability to prevent cancer and detect it at an early stage through individual projects.
Across the Border Virtually
The Ottawa GIST Day of Learning (GDOL) was hosted by the Life Raft Group Canada and the LRG's Pete Knox presented on SideEQ virtually.