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

Johns Hopkins University

Status: Enrolling

Conditions: End Stage Renal Disease; End Stage Liver Disease

Treatments: Other: The Donor App

Study type: Interventional

Funder types: Other

Identifiers

NCT03803423

IRB00146922

Details and patient eligibility

About

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.

Full 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.

Enrollment: 1,000 estimated patients

Sex: All

Ages: 18+ years old

Volunteers: Accepts Healthy Volunteers

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

Trial design

Primary purpose: Other

Allocation: N/A

Interventional model: Single Group Assignment

Masking: None (Open label)

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1,000 participants in 1 patient group

The Donor App

Experimental group

Description:

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.

Treatment:

Other: The Donor App