A minimum of 3 family members are necessary for participation in the Registry. You will have the satisfaction of knowing that you are contributing to important studies that may help us better understand and prevent cancer. Yes, you may stop being in the Registry at any time. Research and relevant clinical findings using Registry data and specimens will be available to you through the biannual newsletters and free educational programs offered to all Registry participants. We are unable to give individual results from any genetic studies conducted with samples collected for the Registry.
Any testing conducted is for research purposes only.
If you wish to know your genetic risk, we will provide a list of genetic counseling services in the New York area. Data released to qualified researchers by the Registry will not contain any information such as names or addresses that can be used to identify you. The information you provide will be used for research purposes only and will be kept strictly confidential. The Registry is also protected by a Certificate of Confidentiality issued by the National Institute of Health.