Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- The protocol lists: The Donor App.
- Who it may be relevant to
- Registry conditions: End Stage Renal Disease, End Stage Liver Disease. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
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Overview
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.
Interventions
- 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.
Primary outcome measures
- Potential donors identified [Time frame: Up to 5 years]
- Live donor transplantation [Time frame: Up to 5 years]
Secondary outcome measures (2)
- App utilization as assessed by number of participants with story completion and posting in the donor app [Time frame: Up to 5 years]
- The Donor App Implementation [Time frame: Up to 5 years]
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
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: Yes
Study design
- Allocation
- N/A
- Model
- Single group
- Masking
- Open label
- Primary purpose
- Other
Study locations
United States · 6 centers
- Scripps Green Hospital — San Diego
- Yale University — New Haven
- Rush University Medical Center — Chicago
- Maine Medical Center — Portland
- The Johns Hopkins Hospital — Baltimore
- Washington University in St. Louis — St Louis
Publications
- 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. PMID 27402293
- 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. PMID 27501516
Identifiers
NCT: NCT03803423 · IRB00146922