Beat SCAD Conference celebrates 10 years of UK research

The fourth Beat SCAD Conference took place in Leicester on 14 October and celebrated 10 years of UK SCAD research.

We welcomed 130 delegates, including 70 SCAD patients, their families and friends, and healthcare professionals and researchers.

Starting off the day, Rebecca Breslin, Chair and Co-founder of Beat SCAD, highlighted the charity’s successes and discussed our aims for the future. The theme of the day was The Power of Patients and Research as a Driver for Change and Rebecca recalled the first meetings between patients and researchers in Leicester in 2013 that led to the research project being set up.

She went on to acknowledge the important part volunteers play in the success of Beat SCAD in raising awarenesss, supporting those affected by SCAD and funding research. We are currently looking for volunteers in the areas of volunteer management, fundraising, social media and more, so if you’re interested in helping please email us.

She then announced that Beat SCAD has increased its previous award to fund a two-year Clinical Research Fellow position by £98.6K to be the majority funder of a three-year PhD position, which will be filled by Dr Anju John.

SCAD research

Dr David Adlam, who is leading the SCAD research in Leicester, then took the floor and talked about what we know about SCAD after 10 years of research. Discussing the question how common is SCAD?, he revealed that the SCAD clinic will see more than 400 patients this year and there are possibly four times that number across the UK, meaning that at least four SCADs probably occur in the UK every day.

He then discussed how patients present with SCAD, the pros and cons of invasive angiography versus CT scans for diagnosing SCAD and the preference for conservative management where possible. Chest pain after SCAD is well recognised and for most patients this will get better after 18 months to two years.

Dr Adlam then went on to say more capacity is needed for SCAD clinical services and that it’s critical for these services to be networked for research and educational purposes. He announced that there is a funded pilot Scottish SCAD clinic at Forth Valley Royal Hospital in Larbert, led by Dr Anne Scott and Dr Clare Murphy. This will be supported in person by Dr Adlam for at least the first 12-months. He will continue to support the team thereafter as part of a UK-wide SCAD multidisciplinary team. Furthermore, along with the existing clinic at the Chelsea & Westminster Hospital run by former Clinical Research Fellow Dr Abtehale Al-Hussaini, another clinic is launching at Hammersmith Hospital, run by Dr Rasha Al-Lamee again supported in person by Dr Adlam.

Recovery from SCAD

Professor Lis Neubeck, Head of the Centre for Cardiovascular Health at Edinburgh Napier University, gave the next presentation, discussing what we know about physical and mental recovery from SCAD. She talked about the systematic review of physical and psychosocial recovery of SCAD patients, which found that cardiac rehab exercise is not tailored to SCAD patients and there is no clear guidance on what physical activity patients should do.

Professor Neubeck talked about the need to develop a SCAD-specific cardiac rehab programme, including information on heavy bleeding during periods, contraception and pregnancy, menopause and HRT, recurrent chest pain, high blood pressure, PTSD, anxiety and depression and exercise recommendations.

Fibromuscular Dysplasia

Many SCAD patients are also diagnosed with Fibromuscular Dysplasia (FMD) and Dr Tina Chrysochou, Consultant Nephrologist at Salford Royal and UK lead for the UK FMD study, provided a review of what FMD is, how it is identified and what SCAD patients should know about it. The PHACTR1 genetic discovery from 2019 is relevant for both SCAD and FMD patients (watch Dr Adlam talk about this here).

Dr Chrysochou (pictured) explained how she set up the UK’s first multi-disciplinary FMD clinic in Salford. She also provided an update on the European/International Fibromuscular Dysplasia Registry and Initiative (FEIRI). The UK FMD Study gained full ethical approval in 2022 and will be the UK arm of FEIRI. It started recruiting patients in January 2023.

Adjusting to life after SCAD

Beat SCAD Trustee Sarah Coombes gave an insight into her experience supporting SCAD patients in the Facebook support group and one-to-one. She described the different types of patients, from those who are shell-shocked, through those who say/think they are fine, to the Mrs/Mr Busy, who don’t have time to have a heart attack!

She told delegates recovery is very individual and highlighted the support available, including the Beat SCAD Buddy Service.

Patient engagement in research

Liz Ward, Public Engagement Co-ordinator, NIHR Leicester Biomedical Research Centre (BRC), discussed how the BRCs is enabling pioneering research into medical advancements in Leicester by bringing together academics and clinicians to translate scientific discoveries into potential new treatments, diagnostics and technologies. The BRC has been supportive of the SCAD research from the start and the project has been a great example of how patient engagement with research can move it forward.

SCAD research update

Dr Adlam then discussed the research, how it began and how collaboration has become a key element, with researchers and clinicians across the world working together to investigate all aspects of SCAD.

He said in the past 10 years, there have been 41 scientific papers, editorials or reviews about SCAD; European and US consensus and position statements; one textbook chapter; many presentations and talks across the UK and internationally and said SCAD is now (finally) recognised as a distinct entity in international heart attack guidelines.

He explained the findings of the GWAS (Genome Wide Association Study), published in May and updated the delegates on other research papers.

Looking to the future, he posed some questions that could be considered for research, including how do genes alter arterial function and vulnerability in SCAD? And what roles do female sex hormones and emotional stress play in SCAD?

A message from the Mayo Clinic

Before closing the Conference, Rebecca played a video message for Dr Adlam from Dr Sharonne Hayes and Dr Marysia Tweet from the Mayo Clinic congratulating him and his team on a decade of research. Dr Hayes and Dr Tweet started to research SCAD in 2009 and when Dr Adlam was looking to set up a SCAD research programme in the UK, he contacted Dr Hayes and that collaboration has continued during the past 10 years.

“We are so pleased to have been able to host a Conference this year after Covid prevented us doing it in 2020,” said Rebecca. “We are very proud of all the charity has achieved and in awe of all our fundraisers who have enabled us to donate £396,000 to the UK SCAD research project. We look forward to Dr Anju John joining the research team and pushing the research forward over the next three years.”

Thanks to everyone who attended and made the day such a success. We hope you enjoyed meeting other SCAD patients, families, friends and healthcare professionals. Thanks also to the team at the venue, Leicester College Court, for helping the day run smoothly and to the team at Triskelle Pictures, who did such a wonderful job of recording the presentations and taking photos.

You can watch the highlights video here and look out for links to the videos of the event.

Beat SCAD increases award to fund Clinical Research Fellow Dr Anju John

Last year (April 2022), we announced an award of £106,000 to fund a new Clinical Research Fellow for two years on the UK SCAD research project led by Prof David Adlam in Leicester. Unfortunately, several challenges, including ongoing Covid-19 impact, delayed the appointment of the new team member, but in June 2023, Prof Adlam updated the Trustees with news that an exciting new candidate had been interviewed and a revised strategy was being considered for the post to be a three-year PhD position… subject to securing additional funding.

Further to discussions, financial evaluation and careful consideration of the value of the Clinical Research Fellow to both the SCAD project and the SCAD patient community, we are excited to announce that Beat SCAD has increased the earlier £106,000 award by £98,624.18.

To meet the financial needs of the appointment, the award has required a re-allocation of earlier funds: in September 2020, Beat SCAD awarded £23,000 to fund imaging scans as part of Dr Alice Wood’s PhD research. Only half of this award was used during Dr Wood’s tenure. Therefore, the remaining £11,500 will now be used to fund the new Clinical Research Fellow. The aim is for Beat SCAD to replace the funds later, subject to ongoing fundraising, because imaging scans continue to be an important source of research data.

We are excited to announce that the new Clinical Research Fellow is Dr Anju John (pictured).

Prof Adlam said: “I think Dr Anju John is going to be brilliant, and the three-year time frame provides great stability for the SCAD programme. I only hope I can keep up with her!”

Dr John is currently an interventional cardiology trainee in Manchester and will join Prof Adlam’s team in Leicester from 1st February 2024.

Dr John said: “I have always been interested in the management of coronary artery disease. Being an avid learner and constantly looking for self-improvement, I have been hardworking and continuously evolving professionally. As a cardiology trainee, I have had first-hand experience in managing patients with SCAD and have developed a curiosity in improving the coronary outcomes in those presenting with this under-diagnosed condition. I will be pursuing a PhD at Leicester on SCAD, with the aim to add new knowledge in improving the care and outcome of those presenting with SCAD.”

Rebecca Breslin, Trustee Chair said: “We are extremely happy to have Dr John join the research team for the next three years. We have already seen the important impact and value of the Clinical Research Fellow role following the earlier appointments of Dr Abi Al-Hussaini [2014-2017; BHF funded] and Dr Alice Wood [2017-2021; partially Beat SCAD funded] whose work has contributed to several journal publications, in addition to the support provided directly to patients attending the SCAD clinic as well as their participation in Beat SCAD conferences to present their work.”

Beat SCAD is currently running a campaign to raise £25,000 to support the work of the Clinical Research Fellow. More details about the More research to beat SCAD campaign here Thank you to all donors and supporters so far.

Harriet Mulvaney steps down as trustee

After five years as a Trustee of Beat SCAD, Harriet has sadly stepped down.

Harriet, a mum of three, had a SCAD in November 2014 and, like many patients, searched for information about the condition. She was 44 and felt isolated and traumatised and had a long list of questions that no-one seemed to be able to answer.

As a busy HR Director she volunteered to do a talk at the 2016 Beat SCAD Conference about returning to work after a SCAD. Her unique perspective as both a patient and HR professional was invaluable to delegates.

Harriet Mulvaney gave some advice on how to approach returning to work following a SCAD eventIn 2018 she joined the Trustee Board. Her work centred around raising awareness of SCAD and supporting patients, mainly in Wales, where she lives, but also as a Buddy supporting new patients.

She has made great connections with cardiac rehab teams and paramedics and has attended meetings and given talks to these healthcare professionals, raising awareness and educating people about SCAD.

Harriet also managed the Beat SCAD Shop fulfilling orders and sourcing some great new products, including our lapel badges and the lovely branded hoodies and t-shirts.

Rebecca Breslin, Chair of Beat SCAD, said: “Harriet has made many important contributions and my fellow Trustees, Debbie and Sarah, want to thank her for everything she’s done to move the charity’s mission forward. We will miss her but are pleased that she will stay on as a volunteer and continue to spread the word about SCAD in Wales.”

Harriet said: “I have relished the opportunity to be a Trustee with Beat SCAD. Working with Becks, Debbie and Sarah (and Karen Rockell in my earlier days) has been an honour and a pleasure. The work they do is phenomenal. It has been truly rewarding to help support fellow SCAD patients; to raise awareness, make connections as well as have some fun raising donations these past five years. I’m at a point in my life where my time, thoughts and energies are stretched between extended generations of family and I have had to concede that right now this doesn’t afford me the time I’d like to focus on Beat SCAD. As many of you will know, I had a second SCAD last summer and, while this hasn’t impacted me hugely, it has given me pause for thought. As much as it saddens me, I need to take a break for the foreseeable future and focus on my family and my own health and wellbeing.

“I’d urge anyone to get involved with Beat SCAD. Lots of us doing small things can have a much larger impact than a small number attempting large things. If you have opportunity please do volunteer for this incredible charity, or even consider being a Trustee. It’s been one of the most important things I’ve done in the last five years. I very much look forward to continuing to be part of it and to meeting more SCAD patients in the future.

Genetic risk factors identified for SCAD

New research has revealed underlying genetic risks for SCAD. In the first international Genome Wide Association (GWAS) meta-analysis for SCAD, 16 genes were identified that increase the risk of having a SCAD.

The study involved 1,917 cases of SCAD and 9,292 controls from European ancestry. The 16 identified genes are involved in processes that determine how the cells and connective tissue hold together and how the blood clots when bleeding occurs in tissues.

Interestingly, the researchers found that, while many genes linked to a higher risk of SCAD are shared with risk genes for conventional coronary artery disease (CAD), they have an opposite effect. This means patients with a SCAD have some genetic protection from the risk of CAD, and is further evidence that these diseases are very different. The only shared risk factor appeared to be genetically elevated blood pressure.

These results enhance the understanding of how SCAD links with other common and rare artery diseases and could lead to preventative strategies and targeted treatments in the future.

Dr David Adlam, Associate Professor of Acute and Interventional Cardiology at the University of Leicester, interventional cardiologist at the University Hospitals of Leicester NHS Trust, and lead author of the study, said: “This research confirms that there are multiple genes involved in determining the risk of a person having a SCAD. These genes give us the first key insight into the underlying causes of this disease and provide new lines of enquiry, which we hope will guide future new treatment approaches.”

Rebecca Breslin, Chair Trustee of Beat SCAD, said, “The Beat SCAD team is excited to see this new GWAS publication revealing further genetic findings relevant to SCAD and opening doors for the next stages of research. The global collaborative efforts continue to bring reassurance to the SCAD community that research progress is happening and we are learning more about SCAD all the time.”

The paper ‘Genome-wide association meta-analysis of spontaneous coronary artery dissection identifies risk variants and genes related to artery integrity and tissue-mediated coagulation‘ was published in Nature Genetics on 29 May. The research was led by the National Institute for Health and Care Research (NIHR) Leicester Biomedical Research Centre (BRC) and Universite Paris Cite, and supported by worldwide partners in Canada, the USA and Australia

Dr Adlam added: “We are grateful to Beat SCAD, the NIHR and the British Heart Foundation for funding our work, to our international partners for their collaboration and for all the patients with SCAD and healthy volunteers who gave their time to advance this research.”

Rebecca commented, “Many SCAD patients worry about their family members, especially children, being at risk too so I really hope this publication, and Dr Adlam’s accompanying video (see below), brings reassurance to help ease that worry.

“Beat SCAD funding is proving vital to keep our UK research moving, so thank you to all our supporters and fundraisers who enable our small charity to contribute to huge changes in the SCAD world.”

Beat SCAD talked to Dr Adlam about the findings of the research – click here to watch the video.

Read our summery of the paper’s findings here.

Educational videos about Pregnancy-related SCAD (P-SCAD) launched

Around 10% of SCAD patients are pregnant or post-partum and it’s estimated that 50% of heart attacks in patients who have recently given birth are due to SCAD.

Patients have told us that when they have cardiac symptoms they are often dismissed as pregnancy- or hormone-related, which leads to delayed diagnosis and sometimes devastating outcomes.

Beat SCAD has produced a series of videos discussing pregnancy-related SCAD (P-SCAD). They are aimed mainly at healthcare professionals, but patients will also find them useful.

In the Introduction to P-SCAD video Trustee Sarah Coombes explains what P-SCAD is and the symptoms to watch out for. She explains that patients are often told they are ‘too young’ or ‘too full of hormones’ to be having a heart attack and are checked for pulmonary embolism or pre-eclampsia, but rarely for cardiac conditions, even when they are displaying clear cardiac symptoms.

We talked to Dr David Adlam (UK SCAD Research Lead, Associate Professor of Acute and Interventional Cardiology at University of Leicester & Honorary Consultant Interventionalist Cardiologist at University Hospitals Leicester) about P-SCAD, when it can happen, how common it is, and the findings of a recent research paper on P-SCAD. He also discusses the risks of recurrence in post-SCAD pregnancies.

And three P-SCAD patients tell their very different stories and offer some advice to healthcare professionals presented with a pregnant or post-partum patient who is having cardiac symptoms.

Bronnach had to retire from the teaching job she loved aged 34 after having a SCAD following the birth of her third son. She is now living with heart failure. When she was feeling unwell during her pregnancy, she spoke to her midwife and says “I was made to feel like I was a nuisance.” She adds: “I do often wonder if someone had listened to me, listened to the fact that I just didn’t feel right, could my life have not been impacted as badly as it is now?”

Zoe had a SCAD and cardiac arrest while having dinner with friends. She’d given birth to her daughter a few weeks before and there was no warning that there might be a problem with her heart. “SCAD can happen to anyone and can present in many different ways,” Zoe tells us. She adds: “Don’t always assume that symptoms like pain in the arm or chest are automatically going to be down to breastfeeding or that tiredness is automatically down to having a baby… it could be something else.”

After having her baby, Geri felt unwell but, despite her husband, who is a firefighter, saying he thought she was having a heart attack, she didn’t believe that could be happening. “I never knew anybody like me who had a heart attack. That’s why I didn’t believe or trust in anything,” says Geri. She was referred to a SCAD specialist and says, “If it wasn’t for that, I wouldn’t have made the recovery that I have.”

SCAD patients tend not to fit the ‘profile’ of people who are at risk of heart attacks, so are more likely to be misdiagnosed when presenting with clear cardiac symptoms. Assumptions can be made that symptoms displayed by pregnant or post-partum patients are related to the pregnancy and P-SCAD patients often have worse outcomes than other SCAD patients. Time is muscle and a simple Troponin test can diagnose or rule out a cardiac condition.

Sarah Coombes says: “We hope these videos will raise healthcare professionals’ index of suspicion when presented with a pregnant or post-partum woman who ‘just doesn’t feel right’. Think SCAD and you may save a heart… or even a life!”

Click here for a quick overview of P-SCAD and these patient stories and have a look at the resources below for more information about P-SCAD.

Watch the Introduction to P-SCAD video here.

Dr Adlam, Bronnach, Zoe and Geri offer some advice for healthcare professionals who are presented with a pregnant or post-partum lady displaying cardiac symptoms.

Click below to watch the patient stories:

Geri’s story

Bronnach’s story

Zoe’s story

Many thanks for their help in making this video to… Dr David Adlam, SCAD patients Bronnach, Zoe and Geri, as well as Sophie and her team at Triskelle Pictures.

The costs of making these films were covered by a grant we received to help us raise awareness of P-SCAD.

P-SCAD resources

Pregnancy and Spontaneous Coronary Artery Dissection: Lessons From Survivors and Nonsurvivors, Circulation, 4 June 2022  

Beat SCAD Summary of the above paper. (Many thanks to volunteer Ria Griffiths for her help with this.)

European Society of Cardiology, acute cardiovascular care association, SCAD study group: a position paper on spontaneous coronary artery dissection

MBRRACE-UK Saving Lives Improving Mothers’ Care – Lessons learned to inform maternity care from the UK and Ireland Confidential Enquiries into Maternal Deaths and Morbidity 2018-20

Redefining SCAD (Dr David Adlam explains all things SCAD)

Research publications on SCAD

SCAD clinic referrals

SCAD in the Myles Textbook for Midwives

NHS Mum & Baby app

Beat SCAD leaflets

Frequently asked questions

SCAD and post-SCAD pregnancy clinics established in London

Pregnancy-related SCAD patient stories

P-SCAD stories

Rose’s story

Victoria’s story