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

End Stage Renal Disease Clinical Trial

Official title:

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

Clinical Trial Details — Status: Recruiting

Administrative data

• NCT number: NCT03803423
• Other study ID #: IRB00146922
• Status: Recruiting
• Phase: N/A
• Start date: November 27, 2017
• Est. completion date: November 27, 2024

Study information

• Verified date: November 2023
• Source: Johns Hopkins University
• Contact: Andrew Cameron, MD PhD
• Phone: 4432870134
• Email: donorapp[@]jhu.edu
• Is FDA regulated: No
• Study type: Interventional

Clinical Trial 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.

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.

Recruitment information / eligibility

• Status: Recruiting
• Enrollment: 1000
• Est. completion date: November 27, 2024
• Est. primary completion date: November 27, 2024
• Accepts healthy volunteers: Accepts Healthy Volunteers
• Gender: All
• Age group: 18 Years and older

Eligibility

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

Related Conditions & MeSH terms

• End Stage Liver Disease
• End Stage Renal Disease
• Kidney Failure, Chronic
• Liver Diseases

Intervention

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.

Locations

Country	Name	City	State
United States	The Johns Hopkins Hospital	Baltimore	Maryland
United States	Rush University Medical Center	Chicago	Illinois
United States	Yale University	New Haven	Connecticut
United States	Maine Medical Center	Portland	Maine
United States	Washington University in St. Louis	Saint Louis	Missouri
United States	Scripps Green Hospital	San Diego	California

Sponsors (6)

Lead Sponsor	Collaborator
Johns Hopkins University	MaineHealth, Rush University Medical Center, Scripps Health, Washington University School of Medicine, Yale University

Country where clinical trial is conducted

United States, 

References & Publications (2)

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. — View Citation

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. — View Citation

Outcome

Type	Measure	Description	Time frame	Safety issue
Primary	Potential donors identified	Number of potential live donors that come forward to the transplant center on behalf of the participant.	Up to 5 years
Primary	Live donor transplantation	Number of participants that receive a live donor transplant.	Up to 5 years
Secondary	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
Secondary	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

External Links

•   The Donor App Homepage