The Ohio State University is launching a study to determine the exact cancer risks associated with Cowden Syndrome and Bannayan-Riley Syndrome. In addition, we are trying to determine other medical conditons that are associated with these syndromes and which features are most likely to perdict that someone with a PTEN mutation will have.
Anyone who has an identified(through blood testing) mutation in their PTEN gene us eligible to participate. Participation involves receiving a 30 minuete phone call to complete a baseline health questionnaire and annual follow-up phone surveys for the next five years. You should be contacted by your genetic counselor or physician if you were found to have a mutation through Ohio State's laboratory. However, if you had your genetic testing elsewhere or you were not contacted and would like to participate, please call 1-888-329-1654 and ask to speak to Robert Pilarski about the PTEN questionnaire Study.
We also have early information about a possible clinical trial at The National Institute Of Health for 2004. Some type of drug will be given to shrink or stop growths of tumors. For information read our "general" message board.