However, among the incurably sick there is often a desperate desire to try anything — even an experimental cure — that promises some relief or the distant prospect of cure. Patient groups and the Internet are helping to put these sufferers in touch with researchers, but formal channels are few and far between.
Volterys (www.volterys.org) is the brain-child of Dr. Laurent Hermoye, a Belgian researcher who specialises in magnetic resonance imaging of the brain. His goal is to increase public awareness of the important role of the volunteers in clinical research and to facilitate contacts between volunteers and medical researchers. The legal and ethical aspects of arranging these introductions are in the hands of legal specialists, de Wolf & Partners who are party to the initiative.
It is a unique concept. volunteers sign up, free of charge, filling in a medical questionnaire which is anonymous but traceable. The researchers interrogate the database of anonymous volunteers to match them to the inclusion criteria of their trials. It is not dissimilar to on-line contact dating! The two sides are only put in direct touch with each other when a match has been made and the two parties have agreed upon a specific research project. The recruitment is managed by the researcher's laboratory and conforms to the ethical guidelines laid down by the Helsinki declaration and the European directive of 4 April 2001.
Volterys volunteers have a unique opportunity to contribute to the advance of medical knowledge and also benefit from new treatments before they are available to the public at large. For some studies there is monetary reward. Researchers who avail themselves of the service reduce the time and effort entailed in the cumbersome business of enrolment of adequate numbers of subjects for meaningful clinical trials, all for a very reasonable fee. Volterys offers a free service to researchers doing work on so-called 'orphan drugs' or treatments for rare diseases, where recruiting suitable volunteers is even more difficult.
In the 9 months since the website was launched in France and Belgium, more than 9.000 volunteers have registered. Volterys is now extending its service to Europe and hopes eventually to expand throughout the world."