Expert Access Data Confidentiality Disclosure

Expert Access Data Confidentiality Disclosure

The Expert Access Program is being provided by CLL Society, a 501c3 nonprofit organization. The CLL Society is focused on patient education, support and research. Dedicated to addressing the unmet needs of the CLL and related blood cancer communities, explaining the rapidly changing therapeutic landscape and the importance of clinical trials, supporting and building patient networks, and engaging in research and educate providers and patients.

There is no direct benefit to you for participating in the pre-consult and post-consult surveys. However, this and other data from the Expert Access Program may be used to evaluate the program, demonstrate the impact of expert consultations, and improve CLL stakeholders’ understanding of the patient experience. Data will only be reported in the aggregate and will not be linked to any identifiable personal information in any way. Research staff will protect your data from disclosure to people not connected with the program. The CLL Society Principal Investigator, in cooperation with its staff, will review all data to ensure that it does not contain any information that could potentially be used to directly or indirectly identify you. Any such direct or indirect personally identifiable information will be stored in a designated secured recruitment/recontact datasheet that will only be used by the CLL Society to contact you for the purposes of this study. However, complete confidentiality cannot be guaranteed. In addition, de-identified (i.e., anonymized) data from your participation may be shared with other researchers. The results of this research study may be presented at scientific or professional meetings or published in scientific journals and online outlets. Results may also be shared with funding partners.

If you have any questions about this program, please contact Liza Avruch at lavruch@localhost.