CKiD is revising its policy regarding the return of individual research results from genomic testing.  Currently, we plan to disclose kidney-specific genomic results that are pathogenic, while further assessing how to approach variants of uncertain significance (VUS).

CKiD study coordinators are inviting CKiD participants or their parent/legal guardian to take an online survey (~20- 30 min) about their values and opinions regarding disclosure of results, especially VUS.

We are excited to share with you two short videos that we have developed about pathogenic and uncertain results, which are embedded in the survey. These videos are intended to help families better understand what genomic research is and to think about whether and how they would like to receive genomic research results.