Privacy Policy

Thank you for your interest in the Pioneers Recruitment Registry and your consideration of becoming a research study participant.  By completing the Pioneers Registration process, you will be giving permission for Frontiers’ researchers to contact you if you might be a good match for a research study.

You will be asked to provide your contact information such as name, e-mail address, and phone number, as well as information about your general health and medical history. The information that you provide may be given to researchers from partnering organizations if they have an approved study. Signing up for the Pioneers Registry does not mean that you are consenting for a research study. It only means that you agree to be contacted. We will also use your contact information to provide you with general updates on research studies via a newsletter or bulletin several times each year. At that time, you will also be given the opportunity to update your profile if anything has changed. For more information, please go to our FAQ section.

The Frontiers organization is fully committed to protecting your privacy.    In support of our commitment to your privacy, the following policies are in place to support the collection, use, security and retention of information for the Pioneers Recruitment Registry.

  • Collection and Utilization of Information
  • Your health information is protected by the Health Insurance Portability and Accountability Act, referred to as HIPPA.

  • Information submitted by individuals may be combined so that we can examine the characteristics of various groups within the registry.  This will help us improve our services both to the public and to researchers.  This combined description of registry participants will not identify any individuals.

  • Information in the registry may be reviewed to confirm that we are following federal or state laws governing research. This review may involve staff from the University of Kansas Medical Center Institutional Review Board  (IRB) or IRBs from other participating Frontiers’ institutions as well as various federal agencies.  All reviewers must follow HIPAA privacy requirements.

  • The Pioneers Recruitment Registry web servers collect general information about the number of visitors to the site, the date and time of the visit, pages accessed and the referring web site.  This information helps us evaluate how the Pioneers program and its web site can be improved.

  • If you choose to provide your Social Security Number (SSN), it will be used only to assist in matching to your medical record number.  Your SSN will be safeguarded according to the privacy standards outlined within this statement.

  • Access to the Pioneers database of information is tightly regulated.  Requests for database searches are submitted to a Recruitment Registry Request Committee (RRRC).  During research study planning, investigators may request a simple count of the number of patients who fit the study criteria and have indicated a willingness to be contacted.  After IRB approval, investigators may request a list of registry participants who might qualify for the study.  The list will only contain names and contact information that can be used for recruitment.

  • The information you provide to the registry will not be sold.

  • The information you provide to the registry will only be shared with Frontiers’ member institutions

  • Security and Retention of Information
  • Appropriate security measures are in place to protect against the loss, theft or misuse of information collected by the registry.

  • Registration information will be kept until: 1) you notify us that you want to withdraw as a research study candidate; 2) the Pioneers Recruitment Registry program is closed by the University of Kansas Medical Center; or 3) a registered child has his/her eighteenth birthday (requires re-registration as an adult for continued participation).  Under any of these circumstances, a sixty day period may exist until actual removal of registration information.

  • You are encouraged to update your profile with any new contact information or change in status.  Intentional misrepresentations in data submitted by registrants could result in removal of a registrant profile.

  • Program Oversight and Contact Information
  • Research studies conducted through the University of Kansas Medical Center and Frontiers – The Heartland Institute for Clinical and Translational Research partners are overseen by an IRB that meets federal requirements for the review of research.

  • Questions and concerns regarding the Pioneers Recruitment Registry or this Privacy Statement can be directed to Pioneersresearch@kumc.edu.

You are encouraged to check this page periodically for any updates to the Pioneers Recruitment Registry Privacy Statement.  Any such changes will be consistent with our full commitment to ensuring privacy of registrant information.  Thank you for your interest in participating in a Frontiers research study.