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Privacy Policy

When you sign up for possible participation in the CaRISMA trial, you give us certain information voluntarily. This includes your name, date of birth, gender, mobile phone number, and email address. If you progress beyond the initial prescreening, you give us information about your sickle cell diagnosis, mood, pain, and opioid use for pain. This data is processed to determine your eligibility status for the CaRISMA trial. During the course of your participation, you will be asked to share other personal information such as race, ethnicity, and employment status. All data is collected and stored in a password protected database and secure server at the University of Pittsburgh. The data collected is de-identified for use in research analysis that will help inform future behavior therapy and pain management for individuals with sickle cell disease. Your identifiable information is kept confidential, is not shared without your consent, and only accessed by authorized personnel to facilitate communication regarding your participation and remuneration. You will provide an electronic signature on a consent form indicating that you agree to participate and that you have the right to withdraw your consent at any time by contacting Dr. Charles Jonassaint at If you withdraw from the study, any research use of your medical record information, or research data prior to the date that you formally withdraw your permission will continue to be used. Your participation in the CaRISMA trial is entirely voluntary. To participate in the trial, you are given a consent form to review. Please ask questions about anything you do not understand before you make your decision. A description of this clinical trial is posted on, as required by U.S. law.

If you want to delete your data from the CaRISMA Facebook Messenger app, first connect to CaRISMA SCD on Messenger. On the upper left hand, after the label CaRISMA SCD, there is a down arrow. Click on that arrow to show a list of possible selections. Near the very bottom of the list, there is “delete chat” option with a garbage can icon on the left of it. Please select that option. Then you should see that your data is deleted.
In accordance with the University of Pittsburgh Institutional Review Board, to have your study data deleted, please send your written request to the Principal Investigator listed on the first page of the consent form you signed to participate in the CaRISMA study.