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Research

Photo for RECORD

RECORD

Official Title

Registry of persons with kidney disease Considering participation in Research Database

Status

Ongoing

Overview

Large randomized controlled trials are the type of study needed to determine if treatments have important benefits for people with kidney disease. One of the main barriers to large trials is identifying and enrolling the right people. Many promising trials are either not completed or not attempted due to lack of participant enrollment. RECORD will attempt to reduce this barrier by engaging people with kidney disease in research before asking for their participation in any specific study.

Part of what makes RECORD unique is that people with kidney disease will be trained as researchers to discuss the importance of research and upcoming trials directly with other people with kidney disease. This provides people with kidney disease and their family members with an opportunity to hear from other people with kidney disease who have “walked the walk”.

Study Design

Registry (Observational Study)

Primary Endpoint

The goal of RECORD is to help people understand what trials are, what trials are currently being conducted, what the experience of research participants is like, and to improve researchers’ abilities to plan and conduct research involving people with kidney disease.

Number of Patients

5000

Number of Sites

15

Number of Countries

1

Study Period

2018-2020

Principal Investigator

Michael Walsh

Program Manager

Jessica Tyrwhitt

Collaborators

CanSOLVE CKD