Rare cancer patients are often given conflicting information because there is no significant effort of pooling collective information on rare cancers. Without proper patient guidelines like common cancers, rare cancer patients are pushed into a slew of treatments that show no statistical evidence of effectiveness, testing out standard treatments designed for other next of kin cancers in the mere hopes it will work. Inevitably this leads to a quest to secure spots on limited drug trials or simply resign to whatever time is left. In short, a poor game of Russian roulette.
The Unified Rare Cancer Treatment Database is a shared research program to pool patient information together for authorized medical researchers to create a clinical treatment database for patient reference. In addition to developing additional patient resources, we hope findings will prompt serious researchers to generate new research aimed towards developing new therapies for rare cancers.
More information to be released closer to launch of program.