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NCT Number: NCT03803423

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.

Recruiting

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Key information

Conditions

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

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Scripps Green Hospital, San Diego, California, United States

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About this study

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.

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

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.

Primary outcomes

  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 outcomes

  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.

Study contacts

Contact information is provided by the study sponsor or research team.

Andrew Cameron, MD PhD

CONTACT

[email protected]

4432870134

Sponsors and collaborators

Lead sponsor

Johns Hopkins University

Other

Collaborators

  • MaineHealth
  • Rush University Medical Center
  • Scripps Health
  • Washington University School of Medicine
  • Yale University

Registry information

Important dates

Study start
2017
Primary completion
2026
Study completion
2026
First posted
Jan 14, 2019
Registry last updated
Nov 10, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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