Aortic Dissection Family Screening: The DECIDE-TAD Programme

The aims of the programme are to design a tool to help people at risk of Thoracic Aortic Disease decide if they want to participate in screening; to develop a screening, monitoring and treatment pathway for those who do; to evaluate this pathway to provide evidence that it works; then to implement it as a part of standard NHS care.

The programme evolved from our 2019 Aortic Dissection Awareness Day UK conference, held in Leicester, which was a large-scale Patient & Public Involvement event attended by 160 patients, relatives, clinicians and researchers. Our Chair, aortic dissection survivor Gareth Owens, co-leads the programme with Prof. Gavin Murphy, BHF Chair of Cardiac Surgery at the University of Leicester. This is a true research partnership. A team of patients and relatives from our national patient charity contributes to every aspect of the research, co-creating all plans, designs and outputs, advising on PPI and EDI matters, conducting some of the research and disseminating the results. The DECIDE-TAD programme is supported by our THINK AORTA, THINK FAMILY campaign. Mr. Owens and Prof. Murphy presented the initial results of Phase 1 as a keynote talk at the Society for Cardiothoracic Surgery 2023 Annual Meeting and it featured in this article in the conference newsletter.

The first phase of the programme received an NIHR Programme Development Grant and completed in mid-2023. We are delighted as a result of this work to have been shortlisted and invited by NIHR to submit an application for a Phase 2 Programme Grant for Applied Research (PGfAR) for the full DECIDE-TAD programme. To date, 24 of the 29 cardiac surgery centres in the UK have expressed interest in being a part of DECIDE-TAD. Together with the partnership between researchers and our national patient charity, this means that the DECIDE-TAD programme is well-placed to deliver national change in care pathways which benefits TAD patients and their family members at risk of the disease.

Over 200 of our members have been involved in the DECIDE-TAD research to date. Our charity's patient engagement in the programme is led by a core team of five PPI partners: Gareth Owens, Haleema Saadia, Mark Lewis, Lisa Skinner and Anne Cotton, supported by our Head of Research, Gordon McManus.

Dr. Riccardo Abbasciano, a trainee academic cardiac surgeon in Leicester/London, is pivotal to the success of the programme and is lead author for our publications to date,