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

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.

Study Overview

• Status: Recruiting
• Conditions: End Stage Liver Disease; End Stage Renal Disease
• Intervention / Treatment: Other: The Donor App

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 Type: Interventional
• Enrollment (Estimated): 1000
• Phase: Not Applicable

Contacts and Locations

• Study Contact: Name: Andrew Cameron, MD PhD; Phone Number: 4432870134; Email: donorapp@jhu.edu

Study Locations

• United States
  • California
    • San Diego, California, United States, 92037
      • Enrolling by invitation
      • Scripps Green Hospital
  • Connecticut
    • New Haven, Connecticut, United States, 06520
      • Enrolling by invitation
      • Yale University
  • Illinois
    • Chicago, Illinois, United States, 60612
      • Not yet recruiting
      • Rush University Medical Center
      • Contact: Sherri Loeb, BSN
  • Maine
    • Portland, Maine, United States, 04102
      • Enrolling by invitation
      • Maine Medical Center
  • Maryland
    • Baltimore, Maryland, United States, 21218
      • Recruiting
      • The Johns Hopkins Hospital
      • Contact: Andrew Cameron, MD PhD; Phone Number: 443-287-0134; Email: donorapp@jhu.edu
      • Principal Investigator: Andrew Cameron, MD PhD
  • Missouri
    • St Louis, Missouri, United States, 63110
      • Enrolling by invitation
      • Washington University in St. Louis

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 18 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: Yes

Description

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 Plan

How is the study designed?

Design Details

• Primary Purpose: Other
• Allocation: N/A
• Interventional Model: Single Group Assignment
• Masking: None (Open Label)

Number of Arms

1

Arms and Interventions

Participant Group / 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 www.thedonorapp.com.

What is the study measuring?

Primary Outcome Measures

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

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
App utilization as assessed by number of participants with story completion and posting in the donor app	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.	Up to 5 years
The Donor App Implementation	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.	Up to 5 years

Collaborators and Investigators

• Sponsor: Johns Hopkins University
• Collaborators: Washington University School of Medicine; Yale University; Rush University Medical Center; MaineHealth; Scripps Health
• Investigators: Principal Investigator: Andrew Cameron, MD PhD, Johns Hopkins University

Publications and helpful links

General Publications

• Kumar K, King EA, Muzaale AD, Konel JM, Bramstedt KA, Massie AB, Segev DL, Cameron AM. A Smartphone App for Increasing Live Organ Donation. Am J Transplant. 2016 Dec;16(12):3548-3553. doi: 10.1111/ajt.13961. Epub 2016 Aug 10.
• Bramstedt KA, Cameron AM. Beyond the Billboard: The Facebook-Based Application, Donor, and Its Guided Approach to Facilitating Living Organ Donation. Am J Transplant. 2017 Feb;17(2):336-340. doi: 10.1111/ajt.14004. Epub 2016 Sep 7.

Helpful Links

• The Donor App Homepage

Study record dates

Study Major Dates

• Study Start (Actual): November 27, 2017
• Primary Completion (Estimated): November 27, 2026
• Study Completion (Estimated): November 27, 2026

Study Registration Dates

• First Submitted: January 9, 2019
• First Submitted That Met QC Criteria: January 10, 2019
• First Posted (Actual): January 14, 2019

Study Record Updates

• Last Update Posted (Estimated): November 7, 2025
• Last Update Submitted That Met QC Criteria: November 6, 2025
• Last Verified: November 1, 2025

More Information

Terms related to this study

• Keywords: Education; Social Media; Living Donation; Advocacy; Live Donor Transplant; The Donor App
• Additional Relevant MeSH Terms: Urogenital Diseases; Pathologic Processes; Male Urogenital Diseases; Kidney Diseases; Urologic Diseases; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Chronic Disease; Disease Attributes; Digestive System Diseases; Liver Diseases; Renal Insufficiency; Renal Insufficiency, Chronic; Liver Failure; Hepatic Insufficiency; Pathological Conditions, Signs and Symptoms; Kidney Failure, Chronic; End Stage Liver Disease
• Other Study ID Numbers: IRB00146922

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No