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Unlocking the potential of genetic research in pulmonary arterial hypertension: Insights from clinicians, researchers, and study team.

Published version
Peer-reviewed

Repository DOI


Change log

Authors

Fay, Michaela 
Morrell, Nicholas W 

Abstract

Genetic research and testing are increasingly important for understanding and treating pulmonary arterial hypertension. We aimed to explore how attitudes toward genetic research among clinical and research teams impacted the engagement in genetic research and the integration of genetic insights into clinical practice. We conducted 53 semistructured interviews and focus groups with patients, clinicians, and researchers from nine UK Pulmonary Hypertension centers, who had genetic research experience. Transcripts were thematically coded using inductive analysis. In this study, we focus on the researchers', clinicians', and study team's perspectives. From the interview data, several key themes emerged, ranging from study design, recruitment, and consent procedures to the return of individual genetic results. Additionally, participants reflected on both the successes of these studies and the future directions of genetic research. The analysis highlighted the critical importance of fostering collaborative networks firmly rooted in existing clinical and research infrastructure in rare disease study setups. Furthermore, the significance of trust-building, personalized communication, and transparency among stakeholders was underscored. The study offered valuable insights into the motivating and hindering factors to participant recruitment and consent procedures. Lastly, the findings gathered from processes surrounding the return of individual genetic results, genetic counselling, and the recruitment of relatives provided invaluable lessons regarding the integration of genetics into clinical practice. This in-depth analysis yields a crucial understanding of attitudes to genetic research among various stakeholders and sheds light on the complexities of genetic research and the evidence-practice gap.

Description

Publication status: Published


Funder: Biomedical Research Centre (Cardiovascular theme)


Funder: Pulmonary Hypertension Association UK


Funder: National Institute for Health Research (NIHR)


Funder: BHF Cambridge Centre of Cardiovascular Research Excellence

Keywords

genetic research, pulmonary arterial hypertension, qualitative research, return of genetic results, stakeholders’ perspectives

Journal Title

Pulm Circ

Conference Name

Journal ISSN

2045-8932
2045-8940

Volume Title

14

Publisher

Wiley
Sponsorship
BHF Cambridge Centre for Research Excellence (RE/18/1/34212)
British Heart Foundation (SP/12/12/29836, SP/18/10/33975)
UK Medical Research Council (MR/K020919/1)