All data collected by the Metropolitan New York Registry is kept in the strictest confidence. You can be sure that any information you give the Registry about yourself or your relatives will be protected against any unauthorized use.

Your name, address, and other personal identifiers are stored separately from any other information that you provide. The only people with access to your personal data are the Registry staff, each of whom must sign a confidentiality agreement protecting the confidentiality of all materials they encounter. Outside of the Registry office, no one will ever know of your participation unless you inform them.

The Registry has been issued a Certificate of Confidentiality by the Department of Health and Human Services. This certificate ensures that the Registry cannot be compelled to release confidential data for any purpose, even if it means disregarding court orders, subpoenas, or other legal actions.

All questionnaires and records are kept under strict security in the Registry's offices, and the computer files containing your data are encrypted, accessible only to Registry staff who have been issued the appropriate passwords. All these measures are required by Columbia-Presbyterian Medical Center's Institutional Review Board, or IRB. Any medical institution that receives federal funds must have an IRB to guarantee that anyone who participates in research is treated fairly and confidentially.

The researchers who use data from the Registry must be approved by the Advisory Committee of the National Cancer Institute's Cancer Family Registries. Once approved, the researchers are only given the data relevant to their research. All identifying information is removed, and the data is coded to remove any possible link to names, addresses, or other confidential items.

The Metropolitan New York Registry is as concerned about the confidentiality of your personal information as you are. Not only will we ensure that only appropriate data goes to researchers, we guarantee that no one other than certified Registry staff will ever have access to your personal identifiers.