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Dataset Information

Return of individual genomic research results within the PRAEGNANT multicenter registry study.


ABSTRACT:

Purpose

The PRAEGNANT study is a registry study for metastatic breast cancer patients, focusing on biomarker detection. Recently, within this study, genetic alterations in 37 breast cancer predisposition genes were analyzed and genetic findings were detected for 396 participants. The aim of this project was to return genetic results to the physicians and to analyze actions taken (e.g., disclosure of results to patients, validation of results, clinical impact, and impact on the patient's quality of life) using a questionnaire.

Methods

235 questionnaires were sent out to the study centers, with each questionnaire representing one patient with a genetic finding. The questionnaire consisted of twelve questions in the German language, referring to the disclosure of results, valid

SUBMITTER: Huebner H 

PROVIDER: S-EPMC9822879 | biostudies-literature | 2023 Jan

REPOSITORIES: biostudies-literature