How We Protect Your Privacy
Making sure your information is kept private is important to us. You may visit the CHDS website without providing any personal information. If you or your family has or will participate in the CHDS, all identifying information is kept confidential by study staff.
Federal privacy regulations provide safeguards for privacy, security, and authorized access to study information. All study results and your or your family's answers to questionnaires or other information used for research or tracking purposes are kept strictly confidential. No names or addresses will appear on questionnaires or biological samples. Each study participant is assigned a study identification number and only this ID number is used on study materials.
All study documents are stored in locked file cabinets in restricted-access areas. Data files are created for statistical analyses and all information will be identified by study ID number only. The information we obtain from any one participant is pooled with information provided by other participants to study health and disease. For example, to study breast cancer, data from women with breast cancer is compared to that from women who do not have breast cancer. This helps us understand how the two groups are different and begin to establish potential risk factors for breast cancer. When we publish study results, only statistical summaries are presented and study participants are never identified by name.
Information that you or your family has or will provide to the CHDS study will NOT be shared with employers, insurance companies or anyone else. Your information is strictly protected by confidentiality rules. Your information will be used for the purposes of research only. You may disclose your or your family's participation in the CHDS to others if you choose, but the study will never release any information you provide.
Research conducted by the CHDS is carefully reviewed and monitored by the Institutional Review Board (IRB) of the Public Health Institute (PHI) whose primary responsibility is to protect study subjects, assure subject safety and ethical treatment, uphold the strictest standards of confidentiality and provide guidance to researchers regarding contact with study subjects. The PHI IRB reviews CHDS study plans annually to identify potential issues of concern and works with the study researchers to make needed improvements.