Privacy

The LEGACY Girls Study (LEGACY) takes your privacy and protecting the confidentiality of the information you provide seriously. The study follows strict privacy practices that govern how your information is collected, who will be able to see your information and how that information will be used. Protecting your personal information is extremely important to LEGACY and safeguards are in place to ensure your privacy.

LEGACY was granted approval by the Institutional Review Boards (IRB) at each of the participating LEGACY sites.  This approval must be renewed on a yearly basis through a renewal application. The IRB approves all aspects of the research study and ensures that it meets the required ethical criteria.

The main methods we use to protect your confidentiality are:

1. No names appear on the questionnaires.  Each study participant is assigned a unique study identification number and only this ID number will be used on study materials.
2.  The blood, saliva, and urine samples will also be coded with the study ID number and no names will appear on the tubes.
3.  All study documents are stored in locked file cabinets or stored in restricted-access areas. 
4.  Information obtained or stored in an electronic form will be protected by access passwords, firewalls, and security measures.
5. Access is kept to a minimum. Only a small number of staff members who have signed confidentiality agreements have access to participant information and they only access it for necessary operational purposes. The computers that hold your information are protected by the same kind of encryption technology that is used by banks to protect their customers’ online banking transactions.
6.  Data files will be created for statistical analyses and all information will be identified by studyID number only.  When study results are published in medical journals, only statistical summaries will be presented, no study participants will be identified by name.

Participation in the LEGACY Girls Study is completely voluntary and you and your daughter can choose to stop at any time, to not answer certain questions, or decide to only participate in certain parts of the study and not others. It is your choice.

  • What the study is
  • Why they should participate
  • Resources
  • What do I have to do?