We celebrated our fifth birthday on 7 November with a virtual event where UK SCAD experts Dr David Adlam, Dr Alice Wood and Dr Abi Al-Hussaini gave us insights into where we are now with SCAD research, pregnancy-related SCAD and answered questions from the SCAD community.
Kicking off the event, Rebecca Breslin, Chair and Co-founder of Beat SCAD (pictured right), gave a brief round-up of our first five years, including the fabulous donations we’ve been able to give to the UK research project.
These donations have been made possible by our fundraisers and, over the past five years, they have raised more than £260,000*, which is a fantastic achievement. We have been impacted by Covid-19 and many fundraising events were cancelled or postponed, resulting in less income this year.
However, we are very pleased to say that over the past five years, for every £1 spent, 84.4p has gone to research, which is much higher than our original commitment to donate at least 60% of funds. The rest of the money has been spent on charitable activities, such as conferences and events, merchandise and promotional expenses. And just 2.8p out of every £1 spent goes to running the charity.
To celebrate the achievements of the charity and its supporters, we showed a video, created by volunteer Adam Hackers. Click here to watch it.
Dr Adlam, Associate Professor of Acute and Interventional Cardiology at University of Leicester & Honorary Consultant Interventional Cardiologist at University Hospitals Leicester (pictured below), who is leading the UK SCAD research, talked about the research and future directions.
He discussed the importance of the SCAD section that has been added to the European Society of Cardiology (ESC) 2020 Acute Coronary Syndromes (ACS) Clinical Practice Guidelines, saying that it highlights the importance of recognising SCAD and that the way it’s diagnosed and managed is different to atherosclerotic heart attacks.
The research has, over the past few years, made important steps forward on the genetics front, with the identification of the first common variant genes to be associated with SCAD, as well as more uncommon genes such as those associated with Loeys-Dietz Syndrome.
DNA from nearly 400 patients across the world, including some from the UK, thanks to a £3K donation from Beat SCAD, was sequenced as part of this research.
So we now understand more about what is going on at the DNA level in SCAD patients.
Another paper looked at the size of heart injury after SCAD and found that in the majority of cases, the damage is small. This helps clinicians to understand the consequences of SCAD and how it should be managed.
In terms of next steps, Dr Adlam said there is currently no clinical trial data to guide clinicians on what the best treatments are for SCAD, so that is the next step, as well as setting up large international registries to identify patients who could be recruited to clinical trials.
In the shorter term, the priority is to understand the sub-groups within the SCAD community – men, pregnancy-related SCAD (P-SCAD) and recurrent SCADs.
Dr Adlam concluded by saying the research team is grateful to Beat SCAD for the funding that has enabled them to continue the research, and to patients and healthy volunteers who have helped advance the knowledge of the condition.
He said: “Without the funds we wouldn’t be talking today about the genetics of SCAD or understanding how to manage patients. Without Beat SCAD we wouldn’t be where we are and the UK research has made an important contribution to global research.”
Dr Wood, Research Fellow, (pictured right) talked about her study of male and recurrent SCADs. She said she chose to study men because although there are suspicions that there are hormonal influences in SCAD, there are other factors and, as men don’t have female sex hormones, studying them may reveal useful information. For this study she has currently seen 32 men and nine healthy volunteers.
For recurrent SCADs, studying a small number of people may help identify subtle differences or changes. She has seen 19 women with recurrence and 11 healthy volunteers.
The priority now is to see more patients and healthy volunteers as recruitment had to be paused due to Covid-19, and then analyse the data.
Dr Wood’s work has been part-funded by Beat SCAD.
Clinical observations for pregnancy-related SCAD
Dr Al-Hussaini, Consultant Cardiologist at Chelsea & Westminster and Royal Brompton Hospitals, London (pictured below), who was the first Research Fellow on the UK SCAD research project, talked about pregnancy SCAD.
She said the patient population tends to be younger, with no cardiovascular risk factors, and their SCADs are not always related to a first pregnancy. Presentation can be delayed or missed and they tend to have a larger heart attack than SCADs not related to pregnancy. Multi-vessel SCAD also tends to be more common in P-SCADs.
She explained that the high-risk pregnancy clinic in London involves a multidisciplinary team identifying individual risk factors and management plans for patients who are thinking of getting pregnant after having a SCAD, so they can make a fully informed decision whether to become pregnant.
The team has seen about 35 patients, some of whom have gone on to have successful pregnancies, while others have decided against getting pregnant. She emphasised that pregnancy after SCAD is high risk so patients need to balance the risk factors before deciding how to proceed.
Cardiac rehab survey results
Beat SCAD ran a survey earlier in the year to ask about SCAD patients’ cardiac rehab experience. Volunteer Victoria Warnes-Elgie announced some of the results of that survey, including that, of the 242 people who responded, 69% completed cardiac rehab, and almost 50% felt physically and mentally stronger as a result.
However, a more tailored programme and greater understanding of SCAD was important to SCAD patients, as was access to talking therapies to help with the emotional aspects of having a SCAD.
We will provide more in-depth information about these results in the coming weeks. The survey is still open, and we urge SCAD patients to complete it after they have completed their cardiac rehab programme.
The next five years
Following a Q&A session, Rebecca moved on to our future plans, explaining that the Trustees have been having strategy planning meetings over the summer to identify the projects we want to focus on during the next five years. Look out for information over the coming months.
She announced that to help the SCAD community, we have updated our website with lots of information about Living with SCAD.
We are also now providing a Buddy Service, where SCAD patients can talk to and get support from one of our trained Buddies, fellow patients who can point them in the right direction for information and support.
How you can help – 5 things for 5 years!
Finally, Rebecca asked delegates to do five things to support Beat SCAD in our fifth year:
- Become a volunteer – email us. We’re currently on the lookout for people who have marketing, communication and social media skills.
- Fill in our Keep in touch form.
- Sign up to receive our newsletters.
- Follow us on social media.
- Make regular donations… if we have regular income we can plan more efficiently.
The last five years have been incredible for the charity and we have achieved more than we had ever hoped. But there is a lot more to do to achieve our vision of a world that understands SCAD, where those affected are quickly and accurately diagnosed and never feel alone.
Thanks to everyone who attended our event – we had more than 85 attendees – to SCAD experts Dr David Adlam, Dr Alice Wood, Dr Abi Al-Hussaini for their contributions and for answering lots of questions. And to Victoria Warnes-Elgie for taking us through the results of the Cardiac Rehab survey.
We will be editing the content and uploading it to our Youtube channel in due course, but in the meantime, do watch the video created by volunteer Adam Hackers to celebrate our achievements over the past five years.
And finally, please consider doing one or all of the ‘five things’ to help us achieve our aims.
* Pending final accounts.
The following videos are now on Youtube:
Dr David Adlam on SCAD research
Dr Alice Wood on her study of sub-groups
Dr Abi Al-Hussaini on SCAD and pregnancy
Q&A session with SCAD experts
Cardiac rehab survey
Looking to the future