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

NCT03803423 | Recruiting

• 1 other identifier: IRB00146922
• Study Type: interventional
• Target: 1,000
• Locations: 1 country
• Sites: 6

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.

Conditions

End Stage Renal Disease; End Stage Liver Disease

Keywords

Live Donor Transplant; Social Media; Advocacy; Education; Living Donation; The Donor App

Outcome Measures

Primary Outcomes (2)

• 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 Outcomes (2)

• App utilization as assessed by number of participants with story completion and posting in the donor app

  Up to 5 years

• The Donor App Implementation

  Up to 5 years

Study Arms (1)

The Donor App

EXPERIMENTAL

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

Interventions

The Donor App OTHER

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.

The Donor App

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

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

You may not qualify if:

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

Sponsors & Collaborators

• Johns Hopkins University: lead
• MaineHealth: collaborator
• Washington University School of Medicine: collaborator
• Scripps Health: collaborator
• Yale University: collaborator
• Rush University Medical Center: collaborator

Study Sites (6)

Scripps Green Hospital

San Diego, California, 92037, United States

ENROLLING BY INVITATION

Yale University

New Haven, Connecticut, 06520, United States

ENROLLING BY INVITATION

Rush University Medical Center

Chicago, Illinois, 60612, United States

NOT YET RECRUITING

Maine Medical Center

Portland, Maine, 04102, United States

ENROLLING BY INVITATION

The Johns Hopkins Hospital

Baltimore, Maryland, 21218, United States

RECRUITING

Washington University in St. Louis

St Louis, Missouri, 63110, United States

ENROLLING BY INVITATION

Related Publications (2)

• 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.

  PMID: 27402293 BACKGROUND

• 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.

  PMID: 27501516 BACKGROUND

Related Links

• The Donor App Homepage

MeSH Terms

Conditions

Kidney Failure, Chronic; End Stage Liver Disease

Condition Hierarchy (Ancestors)

Renal Insufficiency, Chronic; Renal Insufficiency; Kidney Diseases; Urologic Diseases; Female Urogenital Diseases; Female Urogenital Diseases and Pregnancy Complications; Urogenital Diseases; Male Urogenital Diseases; Chronic Disease; Disease Attributes; Pathologic Processes; Pathological Conditions, Signs and Symptoms; Liver Failure; Hepatic Insufficiency; Liver Diseases; Digestive System Diseases

Study Officials

• Andrew Cameron, MD PhD

  Johns Hopkins University

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Andrew Cameron, MD PhD

CONTACT

4432870134; donorapp@jhu.edu

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: OTHER
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Model Details: All participants will be invited to use the Donor App.

Study Record Dates

• First Submitted: January 9, 2019
• First Posted: January 14, 2019
• Study Start: November 27, 2017
• Primary Completion (Estimated): November 27, 2026
• Study Completion (Estimated): November 27, 2026
• Last Updated: November 10, 2025

Record last verified: 2025-11

Data Sharing

• IPD Sharing: Will not share

Locations

US (6)