End Stage Renal DiseaseNCT03803423
Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors
A study testing The Donor App in people with End Stage Renal Disease and End Stage Liver Disease, run by Johns Hopkins University at 6 sites in United States.
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. Read more about this study
- Who is it for?
- Ages 18 years and olderHealthy volunteers can take part
- Conditions the study is for
- End Stage Renal Disease, End Stage Liver Disease
- What is being tested?
- The Donor App
- Could I receive a placebo?
- No, everyone receives an active treatment
- How many people
- 1,000 participants
- Where
- 6 sitesUnited States
- Study dates
- 27 Nov 2017to 27 Nov 2026
- Phase
- Interventional
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages 18 years and older
- All sexes
- Healthy volunteers accepted
- Adult, Older adult
Who may be able to join
- At least 18 years of age
- On the kidney-only or liver-only transplant waiting list at a collaborating center
Who cannot join
- Younger than 18 years of age
- Not on the kidney or liver transplant waiting list
- On multiple organ transplant waiting lists
Trial locations and contacts
6 sites in 1 country. Contact the study team or a site near you to ask about taking part.
6 sites in 1 country
United States6 sites, 6 recruiting
- Recruiting
The Johns Hopkins Hospital
Baltimore, Maryland, 21218
Andrew Cameron, MD PhD, 443-287-0134, donorapp@jhu.edu
Andrew Cameron, MD PhD
- Not yet recruiting
Rush University Medical Center
Chicago, Illinois, 60612
Sherri Loeb, BSN
- Enrolling by invitation
Yale University
New Haven, Connecticut, 06520
- Enrolling by invitation
Maine Medical Center
Portland, Maine, 04102
- Enrolling by invitation
Scripps Green Hospital
San Diego, California, 92037
- Enrolling by invitation
Washington University in St. Louis
St Louis, Missouri, 63110
About this study
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.
Read the 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.
- Conditions
- End Stage Renal Disease, End Stage Liver Disease
- Being tested
- The Donor App
- Keywords
- Live Donor Transplant, Social Media, Advocacy, Education, Living Donation, The Donor App
- Medical subject headings
- Kidney Failure, Chronic, End Stage Liver Disease
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
The Donor AppOther
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.
| Study group | Role | What they receive |
|---|---|---|
| The Donor App | Experimental | 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. Receives: Other: The Donor App |
What is being measured
The primary outcome is the main question the study is designed to answer.
Potential donors identified
Number of potential live donors that come forward to the transplant center on behalf of the participant.
Measured: Up to 5 years
Live donor transplantation
Number of participants that receive a live donor transplant.
Measured: Up to 5 years
Secondary outcomes (2)
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.
Measured: Up to 5 years
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.
Measured: Up to 5 years
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted14 Jan 2019
- Study start27 Nov 2017
- Primary completion27 Nov 2026 (estimated)
- Study completion27 Nov 2026 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (2)Papers the sponsor has linked to this study.
- Other trials for End Stage Renal DiseaseStudies of the same condition, open and under way.
- More trials run by Johns Hopkins UniversityThe sponsor's other registered studies.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Interventional
- Phase
- Phase N/A
- Primary purpose
- Other
- Allocation
- Not applicable
- Intervention model
- Single group
- Model description
- All participants will be invited to use the Donor App.
- Masking
- None (open label)
- Enrolment
- 1,000 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Johns Hopkins University
- Sponsor type
- University, hospital or other
- Collaborators
- MaineHealth, Washington University School of Medicine, Scripps Health, Yale University, Rush University Medical Center
- Responsible party
- Sponsor
- Investigators
- Andrew Cameron, MD PhD, Principal investigator, Johns Hopkins University
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT03803423
- Sponsor's protocol ID
- IRB00146922
- Status last verified
- Nov 2025
- First submitted
- 9 Jan 2019
- Last updated
- 10 Nov 2025
- Results posted
- No
- Data monitoring committee
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
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.
PubMed 27402293Bramstedt 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.
PubMed 27501516
Study at a glance
From the registry record, last updated by the sponsor on 10 Nov 2025. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Dissemination of the Donor Application: Utilizing Social Media to Identify Potential Live Organ Donors
- ClinicalTrials.gov ID
- NCT03803423
- Acronym / sponsor ID
- IRB00146922
- Conditions
- End Stage Renal Disease, End Stage Liver Disease
- Keywords
- Live Donor Transplant, Social Media, Advocacy, Education, Living Donation, The Donor App
- Study type
- Interventional
- Recruitment status
- Recruiting
- Enrolment
- 1,000 participants (estimated)
- Lead sponsor
- Johns Hopkins UniversityUniversity, hospital or other
- Collaborators
- MaineHealth, Washington University School of Medicine, Scripps Health, Yale University, Rush University Medical Center
- Study start
- 27 Nov 2017 (actual)
- Primary completion
- 27 Nov 2026 (estimated)
- Study completion
- 27 Nov 2026 (estimated)
- First posted
- 14 Jan 2019 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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.
Study design
- Primary purpose
- Other
- Allocation
- Not applicable
- Intervention model
- Single group
- Masking
- None (open label)
- Number of arms
- 1
- Model description
- All participants will be invited to use the Donor App.
| Arm | Type | Receives |
|---|---|---|
| The Donor App | Experimental | Other: The Donor AppSelect 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. |
Who may qualify
- Ages
- 18 years and older
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Adult, Older adult
Key inclusion criteria (2 listed)
- At least 18 years of age
- On the kidney-only or liver-only transplant waiting list at a collaborating center
Key exclusion criteria (3 listed)
- Younger than 18 years of age
- Not on the kidney or liver transplant waiting list
- On multiple organ transplant waiting lists
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| The Donor AppThe 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. | Other | The Donor App |
Primary outcome
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.
Live donor transplantation
Time frame: Up to 5 years
Number of participants that receive a live donor transplant.
2 secondary outcomes
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
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 10 Nov 2025.
- Background: PubMed 27402293Kumar 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.
- Background: PubMed 27501516Bramstedt 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.
- The Donor App HomepageLink provided by the sponsor.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part.
Andrew Cameron, MD PhD principal investigator
Johns Hopkins University
6 sites in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
A study testing The Donor App in people with End Stage Renal Disease and End Stage Liver Disease, run by Johns Hopkins University at 6 sites in United States.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 3 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: looking for participants now, as of the sponsor's last update on 10 Nov 2025. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 6 sites in United States. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
Contact Andrew Cameron, MD PhD (4432870134, donorapp@jhu.edu), or a site near the patient. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Potential donors identified (time frame: Up to 5 years). The study lists 2 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT03803423, which also lists 2 linked publications.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 10 Nov 2025.