Clinical trial NCT03803423: Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors
Official title: Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors
Study type: INTERVENTIONAL
Overall status: RECRUITING
Phase: NA
Conditions: End Stage Renal Disease
End Stage Liver Disease
Keywords: Live Donor Transplant
Social Media
Advocacy
Education
Living Donation
The Donor App
Lead sponsor: Johns Hopkins University
Sponsor class: OTHER
Collaborators: name: MaineHealth
name: Washington University School of Medicine
name: Scripps Health
name: Yale University
name: Rush University Medical Center
First posted: 2019-01-14
Enrollment: 1000
Sex: ALL
Minimum age (years): 18
Standard ages: ADULT
OLDER_ADULT
Accepts healthy volunteers: yes
Allocation: NA
Intervention model: SINGLE_GROUP
Intervention model description: All participants will be invited to use the Donor App.
Primary purpose: OTHER

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.

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

Primary outcomes:
measure: Potential donors identified
timeFrame: Up to 5 years
measure: Live donor transplantation
timeFrame: Up to 5 years
Secondary outcomes:
measure: App utilization as assessed by number of participants with story completion and posting in the donor app
timeFrame: Up to 5 years
measure: The Donor App Implementation
timeFrame: Up to 5 years
Other outcomes:
Locations:
city: San Diego
country: United States
facility: Scripps Green Hospital
state: California
city: New Haven
country: United States
facility: Yale University
state: Connecticut
city: Chicago
country: United States
facility: Rush University Medical Center
state: Illinois
city: Portland
country: United States
facility: Maine Medical Center
state: Maine
city: Baltimore
country: United States
facility: The Johns Hopkins Hospital
state: Maryland
city: Saint Louis
country: United States
facility: Washington University in St. Louis
state: Missouri
Study officials:
affiliation: Johns Hopkins University
name: Andrew Cameron, MD PhD
role: PRINCIPAL_INVESTIGATOR
References:
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.
citation: 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.