Unlocking the Potential of Genetic Research in Pulmonary Arterial Hypertension: Insights from Clinicians, Researchers and Study Team
<bold>Background:</bold> This study aims to explore attitudes toward genetic research among stakeholders of genetic study in PAH, assess clinicians' abilities and confidence in explaining genetic research findings, and examine their influence on the pace, success, and patient and relative participation in genetic studies. Ultimately, this research seeks to understand how these factors impact the integration of genetic insights into clinical practice. <bold>Methods:</bold> Using purposive sampling, 63 stakeholders from the NBR and PAH Cohort studies were recruited to take part in semi-structured interviews and focus groups, which were recorded, transcribed, anonymised, and analysed thematically. <bold>Results:</bold> From the interviews, key themes emerged, shedding light on challenges in genetic research—study design, recruitment, consent, and the return of genetic results. Participants reflected on study successes and future directions, emphasising the importance of collaborative networks rooted in existing infrastructure. Governance, trust, transparent communication, and personalised approaches were identified as critical. Insights into motivating and hindering factors for recruitment and consent, along with lessons on genetic result return, counselling, and relative recruitment, provided valuable lessons for integrating genetics into PAH clinical practice and strategies to close the evidence-practice gap. <bold>Conclusions:</bold> This study offers strategies for the successful delivery of genetic study and incorporation of genetics in clinical practice in PAH.
Authors
- Michaela Fay
- Emilia Maria ŚWIETLIK
- Nicholas W. Morrell (ORCID: https://orcid.org/0000-0001-5700-9792)
Institutions
- University of Cambridge (GB)
- Bridge University (SS)
- 21c Consultancy (United Kingdom) (GB)
Publication Details
- Published
- 2024-09-14
- DOI
- https://doi.org/10.1183/13993003.congress-2024.pa1615
- Citations
- 1
- Primary Topic
- Pulmonary Hypertension Research and Treatments
- Type
- article
- Field-Weighted Citation Impact
- 0.42