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Exploring genetic counselors' practice of discussing clinical trials with patients.
Bloom, Thea; Bonini, Katherine E; Gutierrez-Kapheim, Melissa; Kinsley, Lisa M; Smith, Maureen E; Duquette, Debra.
Afiliação
  • Bloom T; Center for Genetic Medicine, Northwestern University, Chicago, Illinois, USA.
  • Bonini KE; Institute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
  • Gutierrez-Kapheim M; Center for Genetic Medicine, Northwestern University, Chicago, Illinois, USA.
  • Kinsley LM; Neurology Department, Northwestern Medicine, Chicago, Illinois, USA.
  • Smith ME; Center for Genetic Medicine, Northwestern University, Chicago, Illinois, USA.
  • Duquette D; Center for Genetic Medicine, Northwestern University, Chicago, Illinois, USA.
J Genet Couns ; 2024 Jun 09.
Article em En | MEDLINE | ID: mdl-38853491
ABSTRACT
Despite concerted and accelerated efforts to increase the knowledge of medicine and disease via clinical studies, clinical trials continue to face low enrollment for all patient groups. The dissemination of the availability of clinical trials to individuals with or at risk for hereditary disorders is critical. This study acts as a foundation in determining an unexplored role of clinical trial discussion in genetic counseling practice. Board-certified, patient-facing genetic counselors in the United States were invited to participate in an anonymous survey via the National Society of Genetic Counselors. Between February and April 2022, 157 participants (N = 157) completed the survey on clinical trial discussion with patients, barriers, and facilitators to discussing clinical trials with patients, research experience, and demographics. Survey results identified that most respondents have discussed the availability of clinical trials with a patient (85%). Almost one-third have previous research experience working for a clinical trial (30%). Most agreed that discussions of clinical trials are within the scope of genetic counseling (82%); however, one-third were not comfortable discussing them with patients (34%). Respondents who know how to find specific clinical trials (p < 0.001) were reportedly more likely to be comfortable discussing clinical trials with their patients. In addition to clinical research exposure, this study suggests that further education and training is necessary for genetic counselors to learn how to find and identify specific clinical trials for their patients. In turn, we hope for this to increase genetic counselors' comfort of clinical trial discussion.
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Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Idioma: En Revista: J Genet Couns Assunto da revista: GENETICA MEDICA Ano de publicação: 2024 Tipo de documento: Article País de afiliação: Estados Unidos

Texto completo: 1 Coleções: 01-internacional Base de dados: MEDLINE Idioma: En Revista: J Genet Couns Assunto da revista: GENETICA MEDICA Ano de publicação: 2024 Tipo de documento: Article País de afiliação: Estados Unidos