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

Not Applicable

Recruiting

• Conditions: End Stage Renal Disease; End Stage Liver Disease
• Interventions: Other: The Donor App

• Registration Number: NCT03803423
• Lead Sponsor: 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.

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.

Study Timeline

• Study Start: 2017-11-27
• Study First Submitted: 2019-01-09
• Study First Submitted QC: 2019-01-10
• Study First Posted: 2019-01-14
• Status Verified: 2024-12
• Last Update Submitted: 2024-12-05
• Last Update Posted: 2024-12-06
• Primary Completion: 2025-11-27
• Study Completion: 2025-11-27

Recruitment & Eligibility

• Status: RECRUITING
• Sex: All
• Target Recruitment: 1000

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

Study & Design

• Study Type: INTERVENTIONAL
• Study Design: SINGLE_GROUP

Arm && Interventions

Group	Intervention	Description
The Donor App	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.

Primary Outcome Measures

Name	Time	Method
Potential donors identified	Up to 5 years	Number of potential live donors that come forward to the transplant center on behalf of the participant.
Live donor transplantation	Up to 5 years	Number of participants that receive a live donor transplant.

Secondary Outcome Measures

Name	Time	Method
App utilization as assessed by number of participants with story completion and posting in the donor app	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.
The Donor App Implementation	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.

Trial Locations

Locations (6)

Scripps Green Hospital; 🇺🇸 San Diego, California, United States

The Johns Hopkins Hospital; 🇺🇸 Baltimore, Maryland, United States

Washington University in St. Louis; 🇺🇸 Saint Louis, Missouri, United States

Rush University Medical Center; 🇺🇸 Chicago, Illinois, United States

Maine Medical Center; 🇺🇸 Portland, Maine, United States

Yale University; 🇺🇸 New Haven, Connecticut, United States