Pilot Study of the Liver Live Donor Champion Program

NCT03580629 | Completed

• 1 other identifier: IRB00170784
• Study Type: interventional
• Target: 76
• Locations: 1 country
• Sites: 1

Brief Summary

In this pilot study, investigators plan to enroll liver transplant candidates and a "Live Donor Champion" for an abridged two- or three-month program that provides education and advocacy training in order to expand access to live donor liver transplantation. Investigators have created two versions of the same program and based on feedback from participants and staff, investigators aim to analyze the efficacy of the Liver Liver Donor Champion program on this patient population.

Conditions

End Stage Liver Disease

Keywords

Live Donor Liver Transplant; Education; Advocacy; Live Donor Champion

Outcome Measures

Primary Outcomes (2)

• Live Donor Inquiries

  Live Donor Inquiries on behalf of candidates will be collected/identified through electronic medical system.

  within 2 year of enrollment

• Live Donor Liver Transplantation

  Live Donor Liver Transplantation within one year of enrollment into the study will be collected/identified through electronic medical record system.

  within 2 year of enrollment

Secondary Outcomes (3)

• Knowledge of live donation and liver transplantation

  within 6 months of enrollment

• Comfort initiating conversations

  within 6 months of enrollment

• Feasibility - Implementation Outcome

  within 2 year of enrollment

Study Arms (1)

Liver Live Donor Champion

EXPERIMENTAL

The Liver Live Donor Champion program (LLDC) is the sole educational intervention for this trial. LLDC consists of 2 or 3 monthly sessions (depending on cohort) of approximately 2 or 3 hours each. Each LLDC session is led by a transplant physician or clinical coordinator. The sessions incorporate formal didactics, active-participant learning, personal stories, moderated group discussions, role-playing, and other skill-building exercises. LLDC session topics are as follows: 1) education about End-Stage Liver Disease (ESLD), liver transplantation, and living donation 2) communication skills building 3) Exploring social networks 4) sharing successful donor and recipient stories 5) surgeon and hepatologist panel 6) Program Recap.

Behavioral: Liver Live Donor Champion Program

Interventions

Liver Live Donor Champion Program BEHAVIORAL

Even with adequate education of live donation, many liver transplant candidates still feel ill equipped to ask others to consider donating. Friends and family are often eager to help and may not be able to serve as donors themselves, but might be able to provide instrumental support. A Live Donor Champion (LDC) is a friend or family member who serves as an advocate for the candidate in their pursuit of live donation. The Johns Hopkins Comprehensive Transplant Center has developed the Liver Live Donor Champion program to provide education and advocacy training to waitlist candidates and their LDCs. The support provided by the LDC bridges a critical link between education and action. Using LDCs to increase live donation is a novel approach that has garnered widespread enthusiasm.

Also known as: LLDC program

Liver Live Donor Champion

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Active candidate on the liver transplant waitlist.
• Have no potential living donors at the time of study enrollment.
• Have not had a previous transplant
• be 18 years or older
• be English speaking
• Mentally capable of providing informed consent

You may not qualify if:

• Age less than 18 years old
• Has potential live donor candidates
• non-English speaking
• Previous liver transplant
• Listed for multiple organs

Sponsors & Collaborators

• Johns Hopkins University: lead

Study Sites (1)

The Johns Hopkins University

Baltimore, Maryland, 21218, United States

Location

MeSH Terms

Conditions

End Stage Liver Disease

Condition Hierarchy (Ancestors)

Liver Failure; Hepatic Insufficiency; Liver Diseases; Digestive System Diseases

Study Officials

• Elizabeth A King, MD PhD

  Johns Hopkins University

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: NA
• Masking: NONE
• Purpose: OTHER
• Intervention Model: SINGLE GROUP
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: June 26, 2018
• First Posted: July 9, 2018
• Study Start: September 18, 2018
• Primary Completion: November 28, 2025
• Study Completion: November 29, 2025
• Last Updated: December 22, 2025

Record last verified: 2025-12

Data Sharing

• IPD Sharing: Will not share

Locations

US (1)