Research update November 2020

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.

Rebecca BreslinKicking 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.

Research update

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.Dr David Adlam

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.”

Sub-group study

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.Dr Alice Wood

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.

Dr Abi Al-Hussaini

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:

  1. Become a volunteer – email us. We’re currently on the lookout for people who have marketing, communication and social media skills.
  2. Fill in our Keep in touch form.
  3. Sign up to receive our newsletters.
  4. Follow us on social media.
  5. 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.

Updated 29.11.20

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

Volunteer case study: Database project

Along with many other small charities, Beat SCAD is run by volunteers in their spare time, so we are always on the lookout for opportunities to make some of the admin tasks less time-consuming.

When we needed help automating a labour-intensive task, we posted a volunteer opportunity on Ethical Angel. Volunteer Rosie Wood (pictured), who worked for journal publisher Frontiers offered to help.

Ethical Angel is an employee volunteering service that matches volunteers from employers who want to enable staff to volunteer to help charities looking for help. Volunteers are supported by their employers and Rosie was able to do some of the work during her working day.

The project

Beat SCAD uses a database to store information provided to us by SCAD patients, families and healthcare professionals, so we can keep people up to date with our activities as well as collect data to help us campaign for better care for patients.

The process of getting the information from our Keep in touch form into this database was very labour-intensive so automating this process was a priority so we could spend that valuable time on other areas of our mission.

Two of the Trustees, Karen Rockell and Debbie Oliver, had discussions with Rosie about the charity and the data we collect. Rosie then did some work to create a new Keep in touch form that would produce data in a format that allowed fields to be automatically matched in the database.

At every stage of the project, Rosie kept us up to date with what she was doing. We tested the process throughout and Rosie was always happy to take in changes and tweaks.

The result

Thanks to Rosie, we now have an automated process, which is saving the Trustees a lot of time, and we are very grateful to Rosie and Ethical Angel for all the help they have given us.

The future

Rosie left Frontiers in the summer and is now studying a PhD looking at adsorbents for pollutants in wastewater.

She has offered to continue helping us with database projects to make things more efficient – we have gratefully accepted her offer!

Beat SCAD joins discussion about open access to research papers

Karen Rockell Co-Founder Trustee of Beat SCAD attended a virtual workshop on 20 October, hosted by the National Institute of Health Research (NIHR) to discuss open access to research papers.

Open access makes published academic research freely and permanently available online to read and re-use. The NIHR are currently reviewing their NIHR Open Access policy, and they have been asking for the views of organisations, patients and the public to help with this.

Open access to health research is important so that patients and the public can obtain the findings of health research studies.

Beat SCAD supports free access to health research so the public can learn about the results of NIHR-funded health research.

“Making the findings of health research studies freely available to the public would be a huge benefit to patients and charities like Beat SCAD,” said Karen, who is also an NIHR Research Champion.

Beat SCAD also supports and encourages the inclusion of a jargon free Plain English Summary of the research findings with every study, so that it can be understood by anyone.

Click here for more about the NIHR Open Access Policy.

Eye2i fundraisers publish book about their journey

A decade ago, a few too many beers led three friends to a dangerous conversation about cycling across Europe. Just under two years ago the idea bubbled to the surface again and just about one year ago it happened!

Clive, husband of Beat SCAD’s Co-Founder Trustee Karen Rockell, alongside two other lifelong friends Paul Sorensen and Chris Dowdeswell, cycled in relay from the London Eye to Istanbul, on a project called ‘Eye2i.’ And while they cycled they raised money for Beat SCAD.

One of those friends, Paul Sorensen, kept a diary, in video, photo and note form and posted updates on the Eye2i Three old men on bikes Facebook page. From this a book has emerged – and a very entertaining one at that.

The journey raised just under £7,000 for Beat SCAD as well as giving these three sexagenarians many memories and a sense of achievement that only a 2,500 mile cycle could.

The book Eye to i‘is out now. Could this be the perfect stocking filler or Christmas gift for you or someone you know?  £6.99 at Amazon (utilising Smile for a Beat SCAD donation, of course).

Beat SCAD donates nearly £50K to UK research

We are very pleased to announce that in late September Beat SCAD awarded almost £50K to the UK research project, with just over £30K transferred to the University of Leicester and the remainder ‘ring-fenced’ for subsequent transfer in accordance with project timelines.

In July we announced that Beat SCAD donated £64K to fund a further year of research for Clinical Research Fellow Dr Alice Wood.

Over the summer, the Beat SCAD Trustees had discussions with Dr David Adlam, Associate Professor of Acute and Interventional Cardiology at the University of Leicester and Honorary Consultant Interventional Cardiologist at University Hospitals Leicester, who is leading the SCAD research project, about further funding needs for the study. As a result of these discussions, Beat SCAD are funding the following:

42 cardiac MRI scans – £23.1K

These scans are being done as part of Dr Wood’s phenotyping study into male and recurrent SCADs. Scans cost £550 each and they allow the researchers to look at the cardiac structure and function. The scan data are provided to Dr Wood in a blinded manner, which means she will not be informed of whether the scan belongs to a SCAD patient or a healthy volunteer. The data will be unblinded further down line for results analysis. This approach aids an unbiased review of the scan images. Dr Wood is also looking at responses to pharmacological stress, to see whether there is any difference in perfusion (the passage of fluid through the circulatory system) in patients with SCAD. 

She is also investigating psychological stress as we know that a proportion of SCAD cases happen after psychological stress, and that some SCAD survivors have chest pain when under emotional stress. “I am interested to see both whether SCAD survivors have more marked responses to psychological stress (in terms of blood pressure and heart rate) and also whether this affects myocardial perfusion,” said Dr Wood.

Transcriptomics (analysis of RNA) on skin fibroblasts – £15.6K

Fibroblasts are cells found in connective tissue. Skin biopsies have been taken from 50 SCAD patients and 35 healthy volunteers during the study. The aim of this work is to investigate if there are any differences between the RNA of SCAD patients and healthy volunteers. This will feed into and help further genetics studies into SCAD.

Proteomics – £7.6K

Dr Ania Baranowski has been doing proteomics laboratory work as part of her PhD. This is a study of proteins and looks at blood plasma to identify which proteins are present in SCAD patients’ blood. Dr Baranowski has already looked at one cohort of patients and healthy volunteers and will now study a second cohort of 50 SCAD patients and 50 healthy volunteers to confirm the findings of the first set of results. In order for Dr Baranowski to complete this work we are providing £7.6K for a six-month extension to her PhD.

Laboratory consumables – £3K

We are also providing £3K to fund lab consumables for Dr Baranowski’s work, such as antibodies, gels and reagents required to perform Western blots, which is a technique used to detect specific protein molecules within a mixture of proteins. Dr Baranowski’s work includes looking at proteins associated with the regulation of vascular smooth muscle cells.

These donations take the total amount we have donated to the UK SCAD research project since 2017 to more than £190K! This year’s donations total more than £113K.

Chair of Beat SCAD, Rebecca Breslin, said: “Throughout Beat SCAD’s first five years of operation, the SCAD community has demonstrated an incredible drive to fulfil the charity mission to raise awareness, provide support and fund research. Each year has seen impressive fundraising efforts, which have enabled these important donations to be awarded to Dr Adlam’s research work in Leicester. The impact of these donations is being seen in the publications of research findings, which are steadily being released and are contributing to improved knowledge of SCAD. I extend a heartfelt thank you to all our supporters – the Beat SCAD Trustees appreciate all that you do and we continue to be inspired by you.”

Dr Adlam said: “It has been relatively challenging to get funding outside of Beat SCAD. Without Beat SCAD, things would have come to an end, actually. We would have made some progress but I’m not sure we would have been able to continue at the same level of ongoing research we have. Beat SCAD has been utterly instrumental in allowing us to continue. We appreciate all the hard work of Beat SCAD, your amazing fundraisers, supporters and all the patients, their families and friends.”

Thank you to every single person who has done any fundraising for Beat SCAD – you are making a difference!