Dr. Al Musella interest in brain tumors started when his sister-in-law, Lana, was diagnosed with a GBM in 1992, and was told it was hopeless. After surgery and radiation, the tumor was larger than before the surgery and she was told she only had a few weeks left to live and there was no treatment options for her other than a standard course of BCNU, which had no chance to help her for more than a few extra weeks. Al created and ran the Brain Tumor Forum on Compuserve in January 1993. He organized the members and had them help survey every major hospital in the USA to find what treatments were available. That list was posted on Compuserve and became the basis for the first internet database of clinical trials. At that time, the NCI only maintained lists of clinical trials that they funded, not the trials sponsored by the drug companies or the individual doctors or hospitals. The NCI invited Al to demonstrate his technology to them, and the clinicaltrials.gov website was created.
Dr. Musella is currently focused on getting a new law passed called the promising pathway act. It will create a conditional approval pathway for brain tumor (and other serious diseases) treatments, as well as a learning system to track all patients who use the conditionally approved treatments.