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Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT03803423
Recruitment Status : Recruiting
First Posted : January 14, 2019
Last Update Posted : January 13, 2021
Washington University School of Medicine
Scripps Health
Yale University
Rush University Medical Center
Information provided by (Responsible Party):
Johns Hopkins University

Brief Summary:
This study utilizes a web-based application to help patients on the organ transplant waitlist communicate patient's need for a living donor via social media and provide interested potential donors the opportunity to engage with the evaluation process.

Condition or disease Intervention/treatment Phase
End Stage Renal Disease End Stage Liver Disease Other: The Donor App Not Applicable

Detailed Description:
Barriers to identifying a live donor include lack of education and hesitance to initiate a conversation about live donation. For these reasons, many transplant candidates are hesitant to discuss candidate's illness and are therefore reluctant to pursue live donor transplantation. The investigators hypothesize that utilization of social media to spread awareness about candidate's illness and candidate's need for a live donor will enable many transplant candidates to successfully identify live donors. In this study, participants will use a novel web-based application, called the "Donor App", to create and share candidate's story via Facebook and other social networks to assist in the search for a live donor.

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Study Type : Interventional  (Clinical Trial)
Estimated Enrollment : 1000 participants
Allocation: N/A
Intervention Model: Single Group Assignment
Intervention Model Description: All participants will be invited to use the Donor App.
Masking: None (Open Label)
Primary Purpose: Other
Official Title: Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors
Actual Study Start Date : November 27, 2017
Estimated Primary Completion Date : November 27, 2022
Estimated Study Completion Date : November 27, 2022

Arm Intervention/treatment
Experimental: The Donor App
Select physicians and research staff from about 15 transplant hospitals will be given access to distribute the application to patients who the above people feel could benefit from the application. After obtaining informed consent, an approved member of the study team will enter the participant's name, contact info, and organ needed into the Donor App's secure management portal to send an email or text message with a unique and protected invitation link to the participant. Using this link the participant will be allowed to use the Donor App indefinitely.
Other: The Donor App
The Donor app is a web-based application that helps transplant candidates tell the candidate's story via social media in the hopes of identifying an appropriate living donor. Sample stories created using the Donor App can be found at

Primary Outcome Measures :
  1. Potential donors identified [ Time Frame: Up to 5 years ]
    Number of potential live donors that come forward to the transplant center on behalf of the participant.

  2. Live donor transplantation [ Time Frame: Up to 5 years ]
    Number of participants that receive a live donor transplant.

Secondary Outcome Measures :
  1. App utilization as assessed by number of participants with story completion and posting in the donor app [ Time Frame: Up to 5 years ]
    The extent of a participants story completion and posting will be recorded internally by the Donor App. The number of participants that complete stories and post will be counted to assess app utilization.

  2. The Donor App Implementation [ Time Frame: Up to 5 years ]
    Success of the Donor App across multiple institutions will be tracked by the number of participants enrolled and invited to use the app at each institution.

Information from the National Library of Medicine

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes

Inclusion Criteria:

  • At least 18 years of age
  • On the kidney-only or liver-only transplant waiting list at a collaborating center

Exclusion Criteria:

  • Younger than 18 years of age
  • Not on the kidney or liver transplant waiting list
  • On multiple organ transplant waiting lists

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT03803423

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Contact: Andrew Cameron, MD PhD 4432870134

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United States, California
Scripps Green Hospital Enrolling by invitation
San Diego, California, United States, 92037
United States, Connecticut
Yale University Enrolling by invitation
New Haven, Connecticut, United States, 06520
United States, Illinois
Rush University Medical Center Not yet recruiting
Chicago, Illinois, United States, 60612
Contact: Sherri Loeb, BSN         
United States, Maine
Maine Medical Center Enrolling by invitation
Portland, Maine, United States, 04102
United States, Maryland
The Johns Hopkins Hospital Recruiting
Baltimore, Maryland, United States, 21218
Contact: Andrew Cameron, MD PhD    443-287-0134   
Principal Investigator: Andrew Cameron, MD PhD         
United States, Missouri
Washington University in St. Louis Enrolling by invitation
Saint Louis, Missouri, United States, 63110
Sponsors and Collaborators
Johns Hopkins University
Washington University School of Medicine
Scripps Health
Yale University
Rush University Medical Center
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Principal Investigator: Andrew Cameron, MD PhD Johns Hopkins University
Additional Information:
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Responsible Party: Johns Hopkins University Identifier: NCT03803423    
Other Study ID Numbers: IRB00146922
First Posted: January 14, 2019    Key Record Dates
Last Update Posted: January 13, 2021
Last Verified: January 2021
Individual Participant Data (IPD) Sharing Statement:
Plan to Share IPD: No

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Studies a U.S. FDA-regulated Drug Product: No
Studies a U.S. FDA-regulated Device Product: No
Keywords provided by Johns Hopkins University:
Live Donor Transplant
Social Media
Living Donation
The Donor App
Additional relevant MeSH terms:
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Liver Diseases
End Stage Liver Disease
Kidney Failure, Chronic
Digestive System Diseases
Kidney Diseases
Urologic Diseases
Renal Insufficiency, Chronic
Renal Insufficiency
Liver Failure
Hepatic Insufficiency