“Informative and inspirational”. For Cambridge BRC’s Georgina Norris, those two words summed up this year’s Beat SCAD conference, which took place in Birmingham earlier this month.

SCAD – or Spontaneous Coronary Artery Dissection – is a rare cardiac condition, which cannot yet be predicted or prevented. SCAD can cause heart attack, heart failure, cardiac arrest and can be fatal. Although it has been reported across a wide age range, the majority of cases are in young- to middle-aged women.

Georgina – who is Patient & Public Involvement and Engagement (PPI/E) Co-ordinator at the NIHR Cambridge Biomedical Research Centre – said: “I first met Rebecca Breslin, who is one of the charity Beat SCAD’s co-founders, when working on PPI/E projects for rare diseases.

“Rebecca’s story – along with the 68 SCAD survivors who were also at the conference – is incredible.

“Aged just 34, Rebecca had a heart attack. She knew what it was but no one believed her, because she was young, slim and looked healthy.

“Working with Leicester-based interventional cardiologist and lead for the UK SCAD Research Project Dr Adlam at Leicester University, she then made it her mission to find out other people around the country who have also had SCADs.

“This gave Dr Adlam the numbers he needed to run clinical trials to find out more about the disease.”

Patient power

At the conference Rebecca and Beat SCAD co-founder Karen Rockell both spoke about the charity’s fundraising achievements – which last year alone raised £25,000 for research carried out by Dr Abi Al-Hussaini, former research fellow in Leicester and now London- based cardiologist.

Rebecca and Karen also broke the news that a further £50,000 raised by Beat SCAD will help fund future research run by Dr David Adlam and his team.

Georgina said: “Researchers under Dr Adlam are looking to see if SCAD is an inherited condition.

“On the day SCAD research fellow Dr Alice Wood – who is part of Dr Adlam’s team – also talked about her work looking at sub-groups of patients, such as men, pregnant women and those who’ve had recurrent SCADs, and how this will help add missing information to the research jigsaw puzzle.”

Life after SCAD

For Georgina the day was a demonstration of PPI/E in action: “The day showed that when doctors and researchers work with patients and their carers, the results can be amazing.

“We know more about SCAD than we did even five years ago, and the example of Beat SCAD shows what can be achieved through patients joining forces and working with researchers.

“Above all it showed that there is life after SCAD.”

• For more information visit http://beatscad.org.uk/
• Watch a video created by the British Heart Foundation about the SCAD research at the NIHR Leicester Biomedical Research Centre.
• Beat SCAD is a patient-led charity established to raise awareness of SCAD, provide support to patients and others affected by SCAD, and raise money to fund research into SCAD.

The NIHR Cambridge BRC is offering all research staff a training session on Patient and Public Involvement.

The half-day session will provide staff with an introduction to Patient and Public Involvement (PPI) such as the ‘what’ and ‘why’, and will outline through case studies what PPI methods might be suitable for a research study.

There will be information of how to conduct PPI projects and finding out about local support available to help staff plan and deliver their PPI.

Who can attend?

The event is free and open to all, but particularly aimed at staff who are new to PPI and will be setting up their first PPI project. Research staff do not have to be funded by the NIHR to attend this training session. There is a limited number of places available and booking is on a first-come, first-served basis.

Contact the PPI team for a list of the next available dates.

Following the high demand last year, the eHospital Research Design Authority has arranged another two Epic research seminars for research staff who actively use the Epic system at CUH.

These sessions will give research staff the opportunity to hear about the latest research specific developments and enhancements in the Epic system. There will be a presentation delivered by the eHospital Research team to demonstrate the features and functionality requirements, followed by an opportunity for staff to ask questions with the eHospital Research Design Authority team about using Epic for research studies. These seminars are open to all research staff at CUH who are active Epic users.

If you missed last year’s seminars, it is advisable for you to attend one of these sessions to understand the processes in the Epic system, meet and hear the latest information from the eHospital Research Design Authority and for you to feedback any issues. Places are limited and will be given on a first-come, first-served basis. The seminars will be on:

• 20 April, 09:00-12:00 – Room 4 Deakin Centre, Level 1
• 16 May, 14:00:17:00 – Room 4 Deakin Centre, Level 1

To book a place email: sylvie.robinson@addenbrookes.nhs.uk with ‘Seminar’ in the subject heading and with the date you would like to attend. You are invited to send any questions you have in advance of the seminar, so that the team have an opportunity to prepare an answer ahead of the event.

**This seminar is for all research staff at CUH who are active Epic users**