International collaborations accelerate patient advocacy and affect policy changes and treatment protocols

On May 7th, representatives from Colombia, Chile, Mexico, and The Life Raft Group assembled for the annual Salud con Datos meeting in Wayne, NJ. During this meeting, each country shared the accomplishments that have resulted from the goals set at the previous Salud con Datos conference, such as the establishing clinical trials in Latin America.

Also discussed was the founding of an international research collaboration with the creation of a regional patient registry database in which each country will integrate their de-identified clinical data into The Life Raft Group Patient Registry. The data will then be analyzed with a focus on studying the trends and characterization of GIST patients from each country.

This 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 the outcome of this international collaboration will change health policies, assist with patient advocacy, and increase patient survival. We will do this by joining global data from the U.S. and Latin America, with the goal of spreading awareness by publishing our collaborative results.

Increasing patient survival is at the center of this collaboration. Many patients in Latin America lack access to the therapies and tests that are conversely approved and reimbursed currently in the U.S. and in Europe.

This collection of empirical data will illustrate the crucial importance of access to treatment, and subsequently, help inform policymakers in Latin America and around the globe. This is a small snapshot of the many goals we are planning to accomplish.

View the Salud con Datos 2019 Photo Gallery.