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

Study Overview
=================
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.

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

Conditions
-----------------
End Stage Renal Disease, End Stage Liver Disease

Intervention / Treatment
-----------------
* Other: The Donor App


Participation Criteria
=================
Eligibility Criteria
-----------------
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

Ages Eligible for Study
-----------------
Minimum Age: 18 Years

Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
Accepts Healthy Volunteers

Study Plan
=================
How is the study designed?
-----------------

Design Details

Primary Purpose: Other
Intervention Model: Single Group Assignment
Interventional Model Description: All participants will be invited to use the Donor App.
Masking: None (Open Label)


Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Experimental: The Donor App<br>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<br>* 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.<br>|

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 | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
Live Donor Transplant, Social Media, Advocacy, Education, Living Donation, The Donor App