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

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Return of individual genomic research results within the PRAEGNANT multicenter registry study. / Huebner, Hanna; Ruebner, Matthias; Kurbacher, Christian; Hadji, Peyman; Hartkopf, Andreas D; Lux, Michael P; Huober, Jens; Uhrig, Sabrina; Taran, Florin-Andrei; Overkamp, Friedrich; Tesch, Hans; Häberle, Lothar; Lüftner, Diana; Wallwiener, Markus; Müller, Volkmar; Beckmann, Matthias W; Hein, Alexander; Belleville, Erik; Untch, Michael; Janni, Wolfgang; Fehm, Tanja N; Kolberg, Hans-Christian; Wallwiener, Diethelm; Brucker, Sara Y; Schneeweiss, Andreas; Ettl, Johannes; Fasching, Peter A; Michel, Laura L.

In: BREAST CANCER RES TR, Vol. 197, No. 2, 01.2023, p. 355-368.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Huebner, H, Ruebner, M, Kurbacher, C, Hadji, P, Hartkopf, AD, Lux, MP, Huober, J, Uhrig, S, Taran, F-A, Overkamp, F, Tesch, H, Häberle, L, Lüftner, D, Wallwiener, M, Müller, V, Beckmann, MW, Hein, A, Belleville, E, Untch, M, Janni, W, Fehm, TN, Kolberg, H-C, Wallwiener, D, Brucker, SY, Schneeweiss, A, Ettl, J, Fasching, PA & Michel, LL 2023, 'Return of individual genomic research results within the PRAEGNANT multicenter registry study', BREAST CANCER RES TR, vol. 197, no. 2, pp. 355-368. https://doi.org/10.1007/s10549-022-06795-x

APA

Huebner, H., Ruebner, M., Kurbacher, C., Hadji, P., Hartkopf, A. D., Lux, M. P., Huober, J., Uhrig, S., Taran, F-A., Overkamp, F., Tesch, H., Häberle, L., Lüftner, D., Wallwiener, M., Müller, V., Beckmann, M. W., Hein, A., Belleville, E., Untch, M., ... Michel, L. L. (2023). Return of individual genomic research results within the PRAEGNANT multicenter registry study. BREAST CANCER RES TR, 197(2), 355-368. https://doi.org/10.1007/s10549-022-06795-x

Vancouver

Huebner H, Ruebner M, Kurbacher C, Hadji P, Hartkopf AD, Lux MP et al. Return of individual genomic research results within the PRAEGNANT multicenter registry study. BREAST CANCER RES TR. 2023 Jan;197(2):355-368. https://doi.org/10.1007/s10549-022-06795-x

Bibtex

@article{79e4d505425c40a185b8655c438486ba,
title = "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, validation of test results, and their impact on treatment decisions and on the patient's quality of life.RESULTS: 135 (57.5%) questionnaires were completed. Of these, 46 (34.1%) stated that results were returned to the patients. In 80.0% (N = 36) of cases where results were returned, the patient had not been aware of the finding previously. For 27 patients (64.3%), genetic findings had not been validated beforehand. All validation procedures (N = 15) were covered by the patients' health insurance. For 11 (25.0%) patients, physicians reported that the research results influenced current or future decision-making on treatment, and for 37.8% (N = 17) the results influenced whether family members will be genetically tested.CONCLUSION: This study provides novel insights into the return of research results and into clinical and personal benefits of disclosure of genetic findings within a German registry.",
keywords = "Humans, Female, Breast Neoplasms/epidemiology, Quality of Life, Genomics, Disclosure, Registries, Surveys and Questionnaires",
author = "Hanna Huebner and Matthias Ruebner and Christian Kurbacher and Peyman Hadji and Hartkopf, {Andreas D} and Lux, {Michael P} and Jens Huober and Sabrina Uhrig and Florin-Andrei Taran and Friedrich Overkamp and Hans Tesch and Lothar H{\"a}berle and Diana L{\"u}ftner and Markus Wallwiener and Volkmar M{\"u}ller and Beckmann, {Matthias W} and Alexander Hein and Erik Belleville and Michael Untch and Wolfgang Janni and Fehm, {Tanja N} and Hans-Christian Kolberg and Diethelm Wallwiener and Brucker, {Sara Y} and Andreas Schneeweiss and Johannes Ettl and Fasching, {Peter A} and Michel, {Laura L}",
note = "{\textcopyright} 2022. The Author(s).",
year = "2023",
month = jan,
doi = "10.1007/s10549-022-06795-x",
language = "English",
volume = "197",
pages = "355--368",
journal = "BREAST CANCER RES TR",
issn = "0167-6806",
publisher = "Springer New York",
number = "2",

}

RIS

TY - JOUR

T1 - Return of individual genomic research results within the PRAEGNANT multicenter registry study

AU - Huebner, Hanna

AU - Ruebner, Matthias

AU - Kurbacher, Christian

AU - Hadji, Peyman

AU - Hartkopf, Andreas D

AU - Lux, Michael P

AU - Huober, Jens

AU - Uhrig, Sabrina

AU - Taran, Florin-Andrei

AU - Overkamp, Friedrich

AU - Tesch, Hans

AU - Häberle, Lothar

AU - Lüftner, Diana

AU - Wallwiener, Markus

AU - Müller, Volkmar

AU - Beckmann, Matthias W

AU - Hein, Alexander

AU - Belleville, Erik

AU - Untch, Michael

AU - Janni, Wolfgang

AU - Fehm, Tanja N

AU - Kolberg, Hans-Christian

AU - Wallwiener, Diethelm

AU - Brucker, Sara Y

AU - Schneeweiss, Andreas

AU - Ettl, Johannes

AU - Fasching, Peter A

AU - Michel, Laura L

N1 - © 2022. The Author(s).

PY - 2023/1

Y1 - 2023/1

N2 - 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, validation of test results, and their impact on treatment decisions and on the patient's quality of life.RESULTS: 135 (57.5%) questionnaires were completed. Of these, 46 (34.1%) stated that results were returned to the patients. In 80.0% (N = 36) of cases where results were returned, the patient had not been aware of the finding previously. For 27 patients (64.3%), genetic findings had not been validated beforehand. All validation procedures (N = 15) were covered by the patients' health insurance. For 11 (25.0%) patients, physicians reported that the research results influenced current or future decision-making on treatment, and for 37.8% (N = 17) the results influenced whether family members will be genetically tested.CONCLUSION: This study provides novel insights into the return of research results and into clinical and personal benefits of disclosure of genetic findings within a German registry.

AB - 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, validation of test results, and their impact on treatment decisions and on the patient's quality of life.RESULTS: 135 (57.5%) questionnaires were completed. Of these, 46 (34.1%) stated that results were returned to the patients. In 80.0% (N = 36) of cases where results were returned, the patient had not been aware of the finding previously. For 27 patients (64.3%), genetic findings had not been validated beforehand. All validation procedures (N = 15) were covered by the patients' health insurance. For 11 (25.0%) patients, physicians reported that the research results influenced current or future decision-making on treatment, and for 37.8% (N = 17) the results influenced whether family members will be genetically tested.CONCLUSION: This study provides novel insights into the return of research results and into clinical and personal benefits of disclosure of genetic findings within a German registry.

KW - Humans

KW - Female

KW - Breast Neoplasms/epidemiology

KW - Quality of Life

KW - Genomics

KW - Disclosure

KW - Registries

KW - Surveys and Questionnaires

U2 - 10.1007/s10549-022-06795-x

DO - 10.1007/s10549-022-06795-x

M3 - SCORING: Journal article

C2 - 36409394

VL - 197

SP - 355

EP - 368

JO - BREAST CANCER RES TR

JF - BREAST CANCER RES TR

SN - 0167-6806

IS - 2

ER -