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OpenTrials
Active, Not Recruiting

NCT Number: NCT03099434

Expanding Live Donor Kidney Transplantation Through Advocacy Training and Social Media

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.

Active, Not Recruiting

This study is active but is not currently recruiting participants.

Key information

Conditions

Kidney Failure Female Urogenital Diseases Female Urogenital Diseases and Pregnancy Complications Kidney Diseases Male Urogenital Diseases Renal Insufficiency Urogenital Diseases Urologic Diseases

Age range

18 year and older

Sex eligibility

All sexes

Study type

Interventional

Phase

Not applicable

Primary location

Northwestern University, Evanston, Illinois, United States

Loading trial locations.

About this study

Transplant candidates are hesitant to discuss their illness and the difficulties associated with dialysis, and are therefore reluctant to pursue live donor kidney transplant (LDKT). The investigators will conduct a prospective 3-arm randomized controlled trial with two novel interventions to increase live donation. Arm 1 includes LDC program and the Facebook app, Arm 2 includes just the Facebook app, and Arm 3 includes standard of care. The investigators primary objective is to demonstrate the the effectiveness of these interventions in increasing live donor transplantation rates for candidates with no prior potential live donor.

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • 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.

Exclusion criteria

  • Candidates with live donors currently under evaluation for donation will be excluded.
  • Those with a previous kidney transplant will be excluded

Treatment and study plan

Facebook App

Behavioral

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.

Live Donor Champion + Facebook App

Behavioral

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.

Primary outcomes

  1. Live donor kidney transplantation

    Time frame: within 1 year of enrollment

    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.

Secondary outcomes

  1. Live Donor Inquiries

    Time frame: within 1 year of enrollment

    Live Donor Inquiries on behalf of candidates will be the secondary outcome and will be collected/identified through electronic medical record system.

  2. knowledge of live donation

    Time frame: within 6 months of enrollment

    knowledge of live donation of transplant candidates will be collected during the survey.

  3. comfort initiating conversations

    Time frame: within 6 months of enrollment

    comfort initiating conversations with others about live donation will be collected during the survey.

Sponsors and collaborators

Lead sponsor

Johns Hopkins University

Other

Collaborators

  • National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
  • Northwestern University
  • University of Alabama at Birmingham

Registry information

Acronym: ENGAGE

Important dates

Study start
2017
Primary completion
2026
Study completion
2026
First posted
Apr 4, 2017
Registry last updated
Dec 8, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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