Expanding Live Donor Kidney Transplantation Through Advocacy Training and Social Media
ENGAGE
2 other identifiers
interventional
775
1 country
2
Brief Summary
This pilot study will be a clinical trial to test the feasibility and effectiveness of an educational intervention and a mobile health intervention in adults with end stage renal disease (ESRD) who have not yet identified a potential live donor.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for not_applicable
Started Apr 2017
Longer than P75 for not_applicable
2 active sites
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
March 28, 2017
CompletedStudy Start
First participant enrolled
April 1, 2017
CompletedFirst Posted
Study publicly available on registry
April 4, 2017
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 7, 2026
ExpectedStudy Completion
Last participant's last visit for all outcomes
December 7, 2026
December 8, 2025
December 1, 2025
9.7 years
March 28, 2017
December 4, 2025
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
Live donor kidney transplantation
Live donor kidney transplantation within one year of enrollment into the study will be the primary outcome and will be collected/identified through electronic medical record system.
within 1 year of enrollment
Secondary Outcomes (3)
Live Donor Inquiries
within 1 year of enrollment
knowledge of live donation
within 6 months of enrollment
comfort initiating conversations
within 6 months of enrollment
Study Arms (3)
Live Donor Champion + Facebook App
ACTIVE COMPARATORThe LDC program consists of 6 monthly sessions of approx. 1 hour each. Each LDC session is led by a transplant physician or clinical coordinator. LDC sessions incorporate formal didactics, active-participant learning, personal stories, moderated group discussions, role-playing, and other skill-building exercises. LDC sessions are as follows: 1) education about ESRD, KT, and LDKT 2) communication skills building 3) Exploring social networks 4) sharing successful donor and recipient stories 5) encouraging candidate self-efficacy. At session 3, the the Facebook app will be incorporated and given to candidates. The Facebook app provides step-by-step instructions for creating a Facebook post that details each waitlist candidate's struggle with ESRD and their need for a live donor. The post is then uploaded to Facebook so it can be shared with the candidate's Facebook social network.
Facebook App
ACTIVE COMPARATORThe Facebook app provides step-by-step instructions for creating a Facebook post that details each waitlist candidate's struggle with ESRD and their need for a live donor. The post is then uploaded to Facebook so it can be shared with the candidate's Facebook social network. The Facebook App prompts users with specific questions to create a narrative. Links to supplemental resources are auto-populated into the post to provide anyone that views the post with vetted information about the risks, benefits, and process of live donation. Candidates using the Facebook app attend one focus group session held at the transplant center where they are provided with verbal instructions and visual demonstrations of installation and use of the Facebook app.
Standard of Care
NO INTERVENTIONStandard of Care does not include any of the interventions detailed above, but rather normal routine care as this is the control group.
Interventions
This web-based mobile application allows candidates to write a simple and effective story to share with their previously built network on Facebook to help share their story and identify a potential live donor.
A "Live Donor Champion" (LDC) is a friend, family member, or community member who serves as an advocate for the candidate in their pursuit of live donation. The investigators have developed a six-month program that provides education and advocacy training to waitlist candidates and their LDCs.
Eligibility Criteria
You may qualify if:
- Kidney transplant candidates aged≥18 added to the waitlist in the last year with no potential live donors are eligible.
- If there is an individual willing to donate, but the candidate is unwilling to consider this option or this particular individual, the candidate is eligible for the trial and may still benefit from identification of new donors or increased comfort accepting donation from others.
- Participants at Johns Hopkins University or University of Alabama must speak English. Participants at Northwestern University must speak English or Spanish.
You may not qualify if:
- Candidates with live donors currently under evaluation for donation will be excluded.
- Those with a previous kidney transplant will be excluded
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- Johns Hopkins Universitylead
- University of Alabama at Birminghamcollaborator
- Northwestern Universitycollaborator
- National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)collaborator
Study Sites (2)
Northwestern University
Evanston, Illinois, 60208, United States
Johns Hopkins University
Baltimore, Maryland, 21218, United States
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Andrew Cameron, MD PhD
Johns Hopkins University
Study Design
- Study Type
- interventional
- Phase
- not applicable
- Allocation
- RANDOMIZED
- Masking
- DOUBLE
- Who Masked
- CARE PROVIDER, INVESTIGATOR
- Purpose
- OTHER
- Intervention Model
- FACTORIAL
- Sponsor Type
- OTHER
- Responsible Party
- SPONSOR
Study Record Dates
First Submitted
March 28, 2017
First Posted
April 4, 2017
Study Start
April 1, 2017
Primary Completion (Estimated)
December 7, 2026
Study Completion (Estimated)
December 7, 2026
Last Updated
December 8, 2025
Record last verified: 2025-12
Data Sharing
- IPD Sharing
- Will not share