There is an interesting list on the internet of clinical trials and noteworthy treatments of Brain Tumors at http://www.virtualtrials.com/, hosted by Dr. Al Musella. Dr. Musella is not a neurologist, he is a dentist whose interest in brain tumors stems from a friend's diagnosis with a brain tumor. He is an active and very helpful member of the internet-based Brain Tumor listservice, a mailing list which can bring you a wealth of correspondence about people's experience with brain tumors.

Dr. Musella maintains a "Virtual Clinical Trial" database where brain tumor patients send him their histories, and he collates the information. While it is not a real clinical trial, it is a very effective way of pooling experiences from people throughout the world. The idea is to try to determine which treatments make sense for which conditions. In all cases, the final determination of the applicability of a possible treatment to a particular condition and patient situation should be made by the individual in consultation with their own local medical team.

It would be good if as many VHL patients as possible were to participate in this database, to develop a good statistical basis for hemangioblastomas. This particular type of tumor also occurs in the general population (where it is quite rare), and the combination of the experiences of the VHL community with others in the general population could be very helpful to us all. Connect to this website, and if you are willing, share your own experiences with treatment for brain tumors.

http://www.virtualtrials.com/

As published in the VHL Family Forum 5:1, March 1997. [updated link 5 July 1999] For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.