project surveillanceIt’s Monday morning…

A patient looks expectantly at their physician.

The patient has exhausted all the traditional lines of treatment for GIST, resistant to Gleevec, Sutent and Stivarga.

The physician is out of answers.

Unbeknownst to him, in the last 90 days in four other physician practices, patients have been responding to an off-label treatment.

How could this life saving information be disseminated in a timelier manner, not waiting for lengthy clinical trials or peer-reviewed publications?

Introducing Project Surveillance, a collaborative project that will enable researchers and clinicians access to timely information that may provide enough data to make critical clinical decisions for their patients.

Providing a platform for GIST specialists to share their data, plus the rich data from the Life Raft Group’s Patient Registry, the largest GIST registry in the world, it is possible that Monday morning decision-making will become smarter.


Developed to fill the need for real-world, actionable information that can lead directly to lifesaving clinical interventions, Project Surveillance was born at CTOS, 2017 in Hawaii through a conversation between Norman Scherzer, Executive Director of the Life Raft Group, Jonathan C. Trent, MD, Ph.D.,  Associate Director for Clinical Research and Director of the Bone and Soft Tissue Sarcoma Group at Sylvester Comprehensive Cancer Center, Miami; Jason Sicklick, MD, FACS, Surgical Oncologist, Associate Professor of Surgery, Moores Cancer Center, University of California, San Diego and Michael C. Heinrich, MD, Professor of Medicine, School of Medicine, Oregon Health & Sciences. Gary K, Schwartz, MD, Division Chief, Hematology/Oncology, Associate Director, Herbert Irving Comprehensive Cancer Center of Columbia University Medical Center, although not at CTOS, is also a founding member of this consortium.

Formal clinical trials and traditional publications, although providing valuable findings that eventually can lead to life saving treatments, have a critical time lag component. Additionally, traditional research collaborations do not have built-in safeguards to assure that experts share their observations.

Add to this the fact that many GIST patients are not being seen by GIST specialists, but by local oncologists. Patients are looking to become empowered, and often turn to internet research to seek strategies for survival.

Project Surveillance aims to close this critical time gap, 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.

– An initial focus will be on Pediatric/Wildtype/SDH Deficient data.