The Network is developing a research strategy and programme which aims to address issues that are important for the further development and improvement of clinical practice for the benefit of CHD patients
The recent restructure of the Faculty of Medical Sciences at Newcastle University has led to the creation of three core Institutes:
• Translational and Clinical Research
• Population Health Sciences
Within these institutes there are several cross-cutting themes (Appendix 1). Those involved in congenital cardiac research in Newcastle have newly organised into the congenital heart disease (CHD) research group with members in all Institutes, but coming together under the theme of Reproduction, Development and Child Health. This group leads CHD research across the North East and North Cumbria-CHD Network. Clinicians hold honorary contracts appropriate to their level of involvement.
Dr Louise Coats (Clinical Intermediate Fellow; Honorary Consultant ACHD) is the Clinical and Administrative lead for the CHD research Group. The group now has a dedicated web presence (https://blogs.ncl.ac.uk/congenitalhearts/) to link between themes, to wider cardiovascular research page, NHS and Network sites. The group recently contributed to Newcastle’s successful bid to form an Academic Health Science Partnership between Newcastle University and Newcastle upon Tyne NHS Foundation Trust.
In 2019/20 we successfully hosted the British Congenital Cardiac Association Meeting with excellent feedback and a strong international faculty. The theme from development to destination focused on aortic disease and the Fontan circulation (https://bcca2019.co.uk). Due to the Faculty restructure and Covid-19 situation the format of local meetings is undergoing change. We are presently developing a seminar series with an online format (possibly moving to hybrid in the future).
The Cardiac Morphology Meeting, held 3-4 times each year, is a multidisciplinary clinical meeting integrating basic science concepts and advances in anatomy and development with clinical imaging and intervention.
A Cardiac Development and Congenital Heart Disease Meeting is held each Friday in term time at the Institute of Genetic Medicine and is a formal presentation of research, both clinical and laboratory based.
Business Research Meetings are presently held monthly, now online, but rotating between hospital and University in the future.
It is likely some further meetings will occur in conjunction with the Vascular Biology Medicine Theme under the wider heading of cardiovascular research.
The objective is to develop a comprehensive online/hybrid seminar series spanning clinical/academic research in CHD including external speakers for 2020/2021.
Clinical Research Network North East and North Cumbria
Clinical research is hosted by Newcastle Upon Tyne Hospitals NHS Foundation Trust, and provides the infrastructure that allows high-quality health research to take place in our region, so that patients and the public can be involved in and benefit from better health and healthcare. Support includes;
Over the course of the last year, we have developed strong links with the CRN cardiac research nurses who have supported one of our specialist nurses in the delivery of the Approach II study (PI Dr Louise Coats) and the Revival study (PI Mr Mohammed Nassar).
The objective over the coming years will be to develop more formal links between the newly formed congenital heart disease operational delivery network and the CRN.
Patient and carer involvement in research is a requirement for the Trust, University and Ethics committees and is good research practise. There are established Patient Carer Public Involvement (PCPI) Groups for young people and for adults with acquired heart disease. As we develop our own structures we will integrate these with existing Trust structures.
Contact us if you or a family member would like to get involved in research projects across the region.
Achievements of the objectives set last year (below) are ongoing. The network will help support this as stakeholder involvement is a key aspect and it is likely that patient groups formalised around this network will link to PCPI groups.
The objectives are to;
Nursing and Ancillary staff
It is expected that all nursing staff will facilitate research in general and have a positive attitude to data collection and studies being conducted. Presently 50% of specialist nurses working within congenital heart disease are GCP trained. The lead Fontan Nurse within NUTH has a specific role in supporting research in relationship to the Fontan population. The cardiac research nurses are available for support for studies that are on the CLRN research portfolio.
The objectives are to;
Junior Medical Staff
Junior doctors are actively encouraged to participate in supporting research studies that are already happening and to be active in their own studies particularly in undertaking sensible pieces of short research that lead to publication. Junior doctors must be GCP trained if they are to consent patients for studies and do so under the supervision of the PI.
Those consultants who wish to be research active are encouraged to apply for formal University status and participate in and run studies and encourage others to participate accordingly. Over the course of the last year a further six clinical staff have applied for University status and joined the group.
Dissemination and Communication of Research
Research outcomes will be publicised via the CHD research group website and are supported by the NUTH Communications Department (email@example.com) and Newcastle University Press Office (https://www.ncl.ac.uk/press/about/)