- ICH GCP
- US Clinical Trials Registry
- Clinical Trial NCT03803423
Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors
November 7, 2023 updated by: Johns Hopkins University
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.
Study Overview
Status
Recruiting
Conditions
Intervention / Treatment
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 Type
Interventional
Enrollment (Estimated)
1000
Phase
- Not Applicable
Contacts and Locations
This section provides the contact details for those conducting the study, and information on where this study is being conducted.
Study Contact
- Name: Andrew Cameron, MD PhD
- Phone Number: 4432870134
- Email: donorapp@jhu.edu
Study Locations
-
-
California
-
San Diego, California, United States, 92037
- Enrolling by invitation
- Scripps Green Hospital
-
-
Connecticut
-
New Haven, Connecticut, United States, 06520
- Enrolling by invitation
- Yale University
-
-
Illinois
-
Chicago, Illinois, United States, 60612
- Not yet recruiting
- Rush University Medical Center
-
Contact:
- Sherri Loeb, BSN
-
-
Maine
-
Portland, Maine, United States, 04102
- Enrolling by invitation
- Maine Medical Center
-
-
Maryland
-
Baltimore, Maryland, United States, 21218
- Recruiting
- The Johns Hopkins Hospital
-
Contact:
- Andrew Cameron, MD PhD
- Phone Number: 443-287-0134
- Email: donorapp@jhu.edu
-
Principal Investigator:
- Andrew Cameron, MD PhD
-
-
Missouri
-
Saint Louis, Missouri, United States, 63110
- Enrolling by invitation
- Washington University in St. Louis
-
-
Participation Criteria
Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.
Eligibility Criteria
Ages Eligible for Study
18 years and older (Adult, Older Adult)
Accepts Healthy Volunteers
Yes
Description
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
Study Plan
This section provides details of the study plan, including how the study is designed and what the study is measuring.
How is the study designed?
Design Details
- Primary Purpose: Other
- Allocation: N/A
- Interventional Model: Single Group Assignment
- Masking: None (Open Label)
Arms and Interventions
Participant Group / 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.
|
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.
|
What is the study measuring?
Primary Outcome Measures
Outcome Measure |
Measure Description |
Time Frame |
---|---|---|
Potential donors identified
Time Frame: Up to 5 years
|
Number of potential live donors that come forward to the transplant center on behalf of the participant.
|
Up to 5 years
|
Live donor transplantation
Time Frame: Up to 5 years
|
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
Time Frame: 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.
|
Up to 5 years
|
The Donor App Implementation
Time Frame: 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.
|
Up to 5 years
|
Collaborators and Investigators
This is where you will find people and organizations involved with this study.
Sponsor
Collaborators
Investigators
- Principal Investigator: Andrew Cameron, MD PhD, Johns Hopkins University
Publications and helpful links
The person responsible for entering information about the study voluntarily provides these publications. These may be about anything related to the study.
General 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.
- 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.
Helpful Links
Study record dates
These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.
Study Major Dates
Study Start (Actual)
November 27, 2017
Primary Completion (Estimated)
November 27, 2024
Study Completion (Estimated)
November 27, 2024
Study Registration Dates
First Submitted
January 9, 2019
First Submitted That Met QC Criteria
January 10, 2019
First Posted (Actual)
January 14, 2019
Study Record Updates
Last Update Posted (Estimated)
November 9, 2023
Last Update Submitted That Met QC Criteria
November 7, 2023
Last Verified
November 1, 2023
More Information
Terms related to this study
Additional Relevant MeSH Terms
- Digestive System Diseases
- Liver Failure
- Hepatic Insufficiency
- Pathologic Processes
- Kidney Diseases
- Urologic Diseases
- Disease Attributes
- Renal Insufficiency
- Renal Insufficiency, Chronic
- Chronic Disease
- Female Urogenital Diseases
- Female Urogenital Diseases and Pregnancy Complications
- Urogenital Diseases
- Male Urogenital Diseases
- Liver Diseases
- End Stage Liver Disease
- Kidney Failure, Chronic
Other Study ID Numbers
- IRB00146922
Plan for Individual participant data (IPD)
Plan to Share Individual Participant Data (IPD)?
NO
Drug and device information, study documents
Studies a U.S. FDA-regulated drug product
No
Studies a U.S. FDA-regulated device product
No
This information was retrieved directly from the website clinicaltrials.gov without any changes. If you have any requests to change, remove or update your study details, please contact register@clinicaltrials.gov. As soon as a change is implemented on clinicaltrials.gov, this will be updated automatically on our website as well.
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