# Building capacity to guide disclosure of genomic research results in CKiD

> **NIH NIH U01** · CHILDREN'S MERCY HOSP (KANSAS CITY, MO) · 2021 · $155,238

## Abstract

PROJECT SUMMARY
This project entitled, “Building Capacity to Guide Disclosure of Genomic Research Results in CKiD”, is specific
both to bioethics research and capacity building in bioethics. The Chronic Kidney Disease in Children (CKiD)
Study is developing policies to disclose individual genomic research results, yet challenged by uncertainties in
being able to provide accurate and valid results to individual participants. Our proposal addresses this challenge
by developing informational support for parents about genomic research results in CKiD with acknowledgement
of the concerns regarding the analytic validity, clinical validity, and/or utility of these data. A multidisciplinary
team including researchers with expertise in genomic research ethics and members of a parent advisory group
will work with health communication media experts to produce a series of short videos on concepts related to
disclosing genetic research data. The proposal will also develop and administer surveys, based on validated
tools, to be used with the videos to assess parent perspectives regarding disclosure of genomic research results
in CKiD. We will recruit 150 CKiD parents to participate in the videos and surveys through the existing structure
of the CKiD study. The survey data on the informed parent perspectives will guide policy development for CKiD
to disclose individual research results to participants and their families.

## Key facts

- **NIH application ID:** 10366290
- **Project number:** 3U01DK066143-19S1
- **Recipient organization:** CHILDREN'S MERCY HOSP (KANSAS CITY, MO)
- **Principal Investigator:** Bradley Alan Warady
- **Activity code:** U01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $155,238
- **Award type:** 3
- **Project period:** 2003-09-30 → 2023-07-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10366290

## Citation

> US National Institutes of Health, RePORTER application 10366290, Building capacity to guide disclosure of genomic research results in CKiD (3U01DK066143-19S1). Retrieved via AI Analytics 2026-05-21 from https://api.ai-analytics.org/grant/nih/10366290. Licensed CC0.

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