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Article History

Received: 7 December 2017

Accepted: 25 April 2018

First Online: 16 May 2018

Ethics approval and consent to participate

: This manuscript does not report on the use of any human or animal data or tissue. However, the study has received Institutional Review Board approval from Northwestern University (#STU00201331) on 10–29-15, and subsequently from BUMC, MC, UC, and HM. Written informed consent will be obtained from all faculty, staff, and administrators participating in site visit one-on-one interviews, and verbal consent will be obtained for group discussions and surveys. Written informed consent will be obtained from all potential transplant recipients and when applicable, their accompanying family members, to review their medical records, to be audio-recorded during transplant education sessions, and to complete CAHPS surveys. Verbal consent will be obtained from patients to audio record their telephone conversations with scheduler staff. A waiver of consent will be obtained from BUMC and MC to retrospectively review medical records of potential recipients and potential living donors, and to prospectively review potential living donors’ medical records. No identifying information of study participants will be shared with the transplant teams. All identifying information will be kept separate from the datasets in digital and paper forms to ensure confidentiality. Data collected from all study sites will be de-identified for analysis purposes, then submitted online to a confidential computer database stored on a server, REDCap, that is kept and maintained at Northwestern University, to which only Dr. Gordon and her Research Coordinators will have access. REDCap is a secure, web-based application for building and managing online data capture for research studies. Digital audio recordings will be stored in secure servers at Northwestern. Electronic documents will be compressed into a .zip file using basic encryption and a password known only to Dr. Gordon and research staff. Study participants completing CAHPS surveys will be compensated $20 for their time.

: The authors declare that they have no competing interests.

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