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

Sponsor

Johns Hopkins University (Other)

Overall Status

Recruiting

CT.gov ID

NCT03803423

Collaborator

MaineHealth (Other), Washington University School of Medicine (Other), Scripps Health (Other), Yale University (Other), Rush University Medical Center (Other)

1,000

Enrollment

Locations

Arm

Anticipated Duration (Months)

166.7

Patients Per Site

2.8

Patients Per Site Per Month

Study Details

Study Description

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.

Condition or Disease	Intervention/Treatment	Phase
End Stage Renal Disease End Stage Liver Disease	Other: The Donor App	N/A

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 Design

Study Type:

Interventional

Anticipated Enrollment :

1000 participants

Allocation:

N/A

Intervention Model:

Single Group Assignment

Intervention Model Description:

All participants will be invited to use the Donor App.All participants will be invited to use the Donor App.

Masking:

None (Open Label)

Primary Purpose:

Other

Official Title:

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

Actual Study Start Date :

Nov 27, 2017

Anticipated Primary Completion Date :

Nov 27, 2022

Anticipated Study Completion Date :

Nov 27, 2022

Arms and Interventions

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.

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.

Outcome Measures

Primary Outcome Measures

Potential donors identified [Up to 5 years]
Number of potential live donors that come forward to the transplant center on behalf of the participant.
Live donor transplantation [Up to 5 years]
Number of participants that receive a live donor transplant.

Secondary Outcome Measures

App utilization as assessed by number of participants with story completion and posting in the donor app [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.
The Donor App Implementation [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.

Eligibility Criteria

Criteria

Ages Eligible for Study:

18 Years and Older

Sexes Eligible for Study:

All

Accepts Healthy Volunteers:

Yes

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

Contacts and Locations

Locations

	Site	City	State	Country	Postal Code
1	Scripps Green Hospital	San Diego	California	United States	92037
2	Yale University	New Haven	Connecticut	United States	06520
3	Rush University Medical Center	Chicago	Illinois	United States	60612
4	Maine Medical Center	Portland	Maine	United States	04102
5	The Johns Hopkins Hospital	Baltimore	Maryland	United States	21218
6	Washington University in St. Louis	Saint Louis	Missouri	United States	63110