Consent for Genetic Biobanking in a Diverse Multisite CKD Cohort.

ABSTRACT:

Introduction

The goal of this study was to examine patterns in the likelihood of consent to genetic research among participants in a prospective kidney disease cohort and biobank, and to determine demographic, clinical, and socioeconomic factors linked to consent for ongoing and future genetic research.

Methods

The Clinical Phenotyping Resource and Biobank Core (C-PROBE) enrolled 1628 adult and pediatric patients with chronic kidney disease from 2009 to 2017 across 7 sites in the United States. Participants were asked at annual study visits for consent to provide DNA samples for future genetic studies. We compared characteristics of participants by initial consent outcome and consent status at their most recent study visit.

Results

Of the C-PROBE participants, 96% con

SUBMITTER: Troost JP 

PROVIDER: S-EPMC6224781 | biostudies-literature | 2018 Nov

REPOSITORIES: biostudies-literature