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NCT04848142

Psychosocial Impact of Disclosing Cancer Predisposition Genetic Testing Results During Childhood

Completed Last updated 18 October 2023
What this trial tests

trial in Pediatric Cancer in 199 participants. Completed in 13 October 2023.

Timeline
7 May 2021
Primary endpoint
13 October 2023
13 October 2023

Quick facts

Lead sponsorSt. Jude Children's Research Hospital
StatusCompleted
Study typeOBSERVATIONAL
Enrollment199
Start date7 May 2021
Primary completion13 October 2023
Estimated completion13 October 2023
Sites1 location across United States

Conditions studied

Sponsor

St. Jude Children's Research Hospital

Who can join

8 and older, any sex, with Pediatric Cancer or Predisposition, Genetic. Patients with the condition only — healthy volunteers not accepted.

Sponsor's own description

The participants are being asked to take part in this research study because the participant is a child who has been diagnosed with cancer and has completed genetic testing to find out if the participant has a variant in a gene that may predispose the participant to cancer, and/or the participants are the parents (i.e., guardian/caregiver) of this child. This research is being done to understand how finding out the results of genetic testing during childhood impacts the participant and family. The investigator will compare the emotions and behavior of parents and children based on the genetic testing results. Primary Objective * Examine the impact of genetic testing result disclosure for a pathogenic (P)/likely pathogenic (LP) germline variant in a known cancer predisposing gene versus negative results on parent adjustment (i.e., emotional functioning, cancer worry, symptom interpretation, and genetic testing related worry/distress). * Examine the impact of genetic testing result disclosure for a P/LP germline variant versus negative results on parenting (i.e., responses to children's symptoms, overprotectiveness, parent-child communication, cohesion, and expressivity in the family). Exploratory Objectives * Examine the impact of genetic testing result disclosure (P/LP versus negative results) on child adjustment (i.e. emotional functioning, cancer worry, self-perception, and life meaning and purpose). * Examine the impact of disclosing a variant of uncertain significance (VUS) on parent adjustment, parenting, and child adjustment. * Examine the indirect association between genetic testing result disclosure (P/LP versus negative results) and child adjustment through parental adjustment and parenting behavior. * Qualitatively identify children and parents' perspectives of how disclosure of a cancer predisposition has affected children's emotional, social, personal, and familial functioning.

Publications & conference data

1 peer-reviewed publication reference this trial (live from Europe PMC):

  1. Landscape of germline cancer predisposition mutations testing and management in pediatrics: Implications for research and clinical care.
    Shahani SA, Marcotte EL. · · 2022 · cited 11× · PMID 36225340 · DOI 10.3389/fped.2022.1011873

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Other recruiting trials for Pediatric Cancer

Currently open trials in the same condition.

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Trials by the same sponsor.

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Data sources for this page

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