The information you provide is held in the strictest confidence. Every person in the study has been assigned a unique study number, and when you submit a survey or biologic specimen, your name and other personal identifiers are removed from the information you give us.
Only a limited number of study personnel have access to your information. No data are ever stored on laptops, and only authorized individuals have access to the data. The study has received a Certificate of Confidentiality, a document which helps us protect the privacy of our research subjects. The Certificate protects against the involuntary release of information about subjects collected during the course of our covered studies. The researchers involved in the studies cannot be forced to disclose the identity or any information collected in the study in any legal proceedings at the federal, state or local level, regardless of whether they are criminal, administrative, or legislative proceedings. Federal funding agencies may review our records under limited circumstances, such as a Department of Health and Human Services (DHHS) request for information for an audit or program evaluation or a Food and Drug Administration (FDA) request under the Food, Drug and Cosmetics Act.
Many people in the LTFU Study are hesitant to provide answers to questions regarding income and wonder what income has to do with their past history of childhood cancer. First, be assured, the information you provide is held in strict confidence. When results of the study are presented, the data is grouped. No individual information is ever identified. A report, for example, might say that 10% of the LTFU Study population has a household income of less than $10,000, not that John Smith earns less than $10,000. Information about income is useful in identifying some of the financial burdens survivors may experience which might impact their ability to get health care services.