Walking to fund research… The Alice Project

Walking to fund research… The Alice Project

When you speak to any SCAD patient who has attended Glenfield Hospital in Leicester to participate in the only UK SCAD research programme, they describe what an incredible experience it is and express how valuable it feels to be a part of the journey to find answers to understand SCAD.

The research has already provided important findings, presented in the European Position Paper (published February 2018) as well as genetics findings and imaging findings.

But the research needs more funding and we can all do our bit to make this happen. Are you willing to help?

Beat SCAD are launching ‘The Alice Project

Dr Alice Wood joined the team in Leicester as a Clinical Research Fellow in 2017 to embark on a three-year PhD with a focus on studying important sub-groups including men with SCAD, those who have experienced more than one SCAD event, and pregnancy related (P-SCAD) cases. Beat SCAD have already donated £75,000 to help fund Dr Wood’s important work (as contributions to salary costs).

Beat SCAD are now working to raise £64,000 for ‘The Alice Project’ to fund an additional year of research by Dr Wood. Numerous events hosted by the charity plus challenges completed by our amazing supporters will make this goal possible.    

On Saturday 14th September, Beat SCAD are hosting a walk at Coombe Country Park, Coventry to bring together SCAD patients, their families and friends. Lead UK researcher, Dr David Adlam will give a talk to share latest updates about the research. The walk is a ticketed event and each adult pays £10 and under 16s are free. Funds will go towards ‘The Alice Project’.

Click here for full event details, including how to register and pay.

Beat SCAD are aiming to raise £16,000 from the walk, one-quarter of ‘The Alice Project’ total.

This may seem a daunting target but the UK SCAD patient group is approaching 600 members. If each group member could raise £30, we would exceed the £16K target! As a community, we can raise the funds that our research needs to keep progressing.

If you are unable to attend the Beat SCAD walk in September, why not host your own?

SCAD patients often arrange local meet-ups and a walk would be another great opportunity to come together in your region. If you use the Facebook patient or family and friends groups, why not create an event? If you don’t use the Facebook groups, feel free to reach out to the Beat SCAD team via contactus@beatscad.org.uk and we can check for any plans to meet in your region.

The Scottish patient group are hosting a walk in Edinburgh on Saturday 31st August and they have set up their own Just Giving fundraising page , which links to the Beat SCAD Alice Project page. This means they can track their own fundraising at the same time as contributing to the overall fundraising total.

How to link your fundraising to the Beat SCAD Alice Project page

If you would like to create your own fundraising page to raise money for ‘The Alice Project’ here’s how to do it:

1. Access the Beat SCAD Alice Project page

2. Click the orange ‘Start Fundraising’ button. You will need a Just Giving account to create your own page.

 

Alternatively, please consider donating via the existing fundraising page.

Tell us about your event!

If you choose to host your own walk, we would love to hear about your day and it would be amazing if you sent us some photos so we can write a story about your walk for our newsletter.

Why is the research so important?

One HUGE reason is the urgent need for SCAD to be included in National Institute for Health and Care Excellence (NICE) guidelines. NICE guidelines inform healthcare professionals nationally and are developed according to the best evidence available. NICE recommendations are created by compiling feedback from experts, people using services, carers and the public. We are on the right path to reach this goal – with more research!

All donations are greatly appreciated – thank you!

https://www.justgiving.com/campaign/beatscad-aliceproject

Scottish SCAD patients call for action at BHF event

Scottish SCAD patients call for action at BHF event

Pictured above (l to r) Margaret Davis, Monica Lennon MSP, and Róisín Falconer

SCAD survivors Margaret Davis and Róisín Falconer attended a British Heart Foundation (BHF) conference in Edinburghon 29 May, where an expert panel aimed to address how heart disease affects women in Scotland, and the inequalities they can experience in diagnosis and care.

According to the BHF, heart attacks kill more Scottish women than breast cancer, but women with heart and circulatory diseases are often diagnosed later than men and have worse outcomes.

The first speaker was Professor Colin Berry, Professor of Cardiology and Imaging at the University of Glasgow, who outlined the key issues. When he asked for questions, Margaret and Róisín spoke about the issues SCAD patients in Scotland have, including difficulties getting referred to the two UK’s SCAD NHS Clinics in Leicester and London. Margaret shared her story and said that she felt that she had been lucky that her SCAD and MI had happened while on holiday in England, as this had led to immediate contact with and quick referral to the team at Leicester.

Professor Berry, who knows about SCAD and cares for some SCAD patients, responded, reinforcing the issues raised and the problems in getting care. The team from Chest Heart & Stroke Scotland (CHSS), who aware of the issues facing SCAD Survivors through discussions with Beat SCAD, supported Margaret’s comments and agreed that more needs to be done in terms of the supply of appropriate Cardiac Rehab.

Scottish patients would like a SCAD clinic established in Scotland to care for Scottish patients. As one has already been set up in Dublin, Margaret asked if, as a Scottish citizen, she would have to apply for an Irish passport to get treatment, as some patients are unable to get referrals to Leicester or London, due to cross-border funding issues.

Monica Lennon, Member of the Scottish Parliament for the Central Scotland, responding on behalf of the other MSPs, said all parties would take this issue forward. Margaret received an email from Monica two days after the Conference confirming the Parliamentary questions she has raised to progress the issues.

The next speaker, Anna Marie Choy from Ninewells Hospital in Dundee, focused on heart issues and pregnancy. Róisín’s SCAD happened after the birth of her third child in 2013. She was told by paramedics she was having a panic attack, then, when they finally did an ECG, they realised she was having a heart attack. She was a slim, healthy 38-year-old with none of the traditional risk factors for heart disease. The doctors who had initially treated her didn’t find the SCAD and told her she was just unlucky and it wouldn’t happen again… but it did. She finally got a SCAD diagnosis, but it was only when she was able to speak to a SCAD expert in Leicester that she started to understand what had happened to her and move on with her life.

“It was like a weight being lifted off my shoulders, to finally talk to an expert, and just the acknowledgement that my symptoms were real, I think was probably a turning point for me. I could get on with my life,” she said.

Margaret said: “You could have heard a pin drop when Róisín was speaking. She got through it fine – I was in tears.”

In the audience were cardiac nurses who work with gynaecology teams, and one of them has followed up with Róisín and is committed to taking this forward.

A massive thanks to Róisín and Margaret for raising awareness not just of SCAD but of the issues Scottish patients have in terms of being referred and getting appropriate treatment. We look forward to hearing about all the follow-up actions from the speakers and audience members.

OCT study reveals more clues about mechanism of SCAD

What causes SCAD? This is one of the key questions SCAD researchers around the world are working hard to answer. Understanding the mechanism of how a SCAD occurs is an important aspect to advance knowledge and guide further research.

The European Position Paper published in February 2018 describes two potential mechanisms:

1) ‘Inside-out’: the development of a ‘tear’, allowing blood to accumulate in the artery;

2) ‘Outside-in’: the development of a ‘bruise’ that haemorrhages (leaks) into the artery wall.

To investigate these theories further, the UK research team led by Dr David Adlam collaborated with colleagues throughout Europe and in South America to study intracoronary images of SCAD patients obtained via Optical Coherence Tomography (OCT).

OCT is a kind of intravascular ultrasound that utilises light to deliver high-resolution cross-sectional images of the inside of the blood vessels. These images are more detailed than the images obtained during a coronary angiography, which is the more routine imaging method used to investigate the heart. Interventional cardiologists may perform OCT in addition to aid decision making for the optimum treatment plan for a patient.

To date, SCAD has largely been thought of in the context of the first mechanism, that a tear develops which blocks normal blood flow and often leads to a heart attack. However, the study found that a proportion of SCAD patients had no visible tear at all. The study also provides insight into the effects of pressure due to compression of the blood vessel which could mean that the tear develops as a result of the pressure rather than the tear being the primary event.

In this video, Dr Adlam describes the study, summarises the findings and their importance, in addition to describing next steps for the research.

The paper, Spontaneous Coronary Artery Dissection: Pathaphysiologal Insights from Optical Coherence Tomography, was published by JACC: Cardiovascular Imaging in March 2019.

Schools raise money for Beat SCAD

Schools raise money for Beat SCAD

Three schools in Newbury, Berkshire, attended by children of a SCAD patient, have raised more than £500 for Beat SCAD!

School nurse Kim had a SCAD in September 2018 (read her story here) and was subsequently diagnosed with Fibromuscular Dysplasia (FMD) as well. Everyday life has changed for Kim, but she has found connecting with other SCAD patients a lifeline.

Her children’s schools held non-uniform days to raise money for Beat SCAD and did a fantastic job. In total the three schools raised £531.42 for Beat SCAD.

St John The Evangelist Nursery and Infant School, which Kim’s youngest son attended at the time she had her SCAD, raised £151.42 for Beat SCAD by selling the crafts the children had made.

At St Nicolas Church of England Junior School, all the children wore red or pink for a day to raise money for Beat SCAD. Kim’s son’s class (pictured below) raised £230.

 

Her eldest two children are in Davis House at St Bartholomew’s Secondary School, which raised £300 by wearing red and making love hearts with their hands. This was split between Children in Need and Beat SCAD. Pictured below is Kim’s daughter and friends with Head of Davis House Mrs McKeown.

Massive thanks to all the children, their parents, families, friends and the teachers who made this possible!

And thanks to Kim, who is pictured below with her husband and children.

Is SCAD still rare?

The European Society of Cardiology European Heart Journal recently published an editorial called ‘Spontaneous coronary artery dissection: no longer a rare disease’.

The article was written by Dr David Adlam, University of Leicester, who is leading the UK SCAD research, Dr Marcos Garcia-Guimaraes, Hospital Universitario de La Princesa, Madrid, and Dr Angela Mass, Radboud University Medical Centre, Nijmegen. The authors discuss the ‘Canadian spontaneous coronary artery dissection cohort study: in-hospital and 30-day outcomes’, by Dr Jacqueline Saw et al.

The study looked at 750 SCAD patients from 22 North American medical centres between 2014 and 2018 and concluded that conservative treatment appears to be safe and is the preferred treatment where possible and that survival rates were excellent. However, significant complications, including recurrence, unplanned revascularisation and stroke may occur within 30 days.

Dr Adlam et al’s editorial highlights that this is the largest prospectively recruited observational study of SCAD and that 750 SCAD patients across 22 sites represents almost nine patients per centre per year. This confirms that SCAD is a significant cause of heart attack and equivalent size centres should expect to see a minimum of one new SCAD a month.

Other points made in the editorial include:

The role of female sex hormones is likely to be complex, rather than a direct cause of SCAD. The average age of patients in this study was 52, so SCAD is not limited to pre-menopausal women. Also, only 10% of the patients studied were taking any hormone therapy at the time of their SCAD, highlighting the fact that the association of SCAD with contraceptive hormones or HRT is not known.

30-day major adverse cardiovascular events (MACE) were reported as 8.8% in the study, with two-thirds occurring before discharge from hospital. Only 6.1% of patients had a recurrent SCAD and, as the majority of the patients were managed conservatively, this strongly supports this management approach. However, the MACE figure suggests SCAD patients should be observed in hospital for longer before discharge.

Dr Adlam et al summarise by saying SCAD is not rare but is an important and often underdiagnosed cause of acute coronary syndrome (ACS), mainly in women. The differences between SCAD and conventional heart disease mean conservative management is preferred.

 

SCAD research updates

SCAD research updates

The SCAD research in Leicester and across the world is moving forward on various fronts, so Beat SCAD caught up with Dr David Adlam and Dr Alice Wood to get an update.

“There is lots going on, with some areas gradually coming to fruition,” says Dr David Adlam, who is leading the SCAD research at the NIHR Biomedical Research Centre, Glenfield Hospital in Leicester.

Dr Adlam continues: “The first genetics paper is published, and we are continuing to work with our collaborators in the Mayo Clinic and France with a view to hopefully publishing further findings later this year.”

The genetics study, ‘Association of the PHACTR1/EDN1 genetic locus with spontaneous coronary artery dissection’,  is quite technical, so to help understand it, click here to watch this video where Dr Adlam explains the findings.

Further news on Leicester research activities includes:

  • Findings from the Optical Coherence Tomography (OCT) study, which relates to the mechanism of SCAD, are expected to be published in March.
  • Dr Adlam and Prof Alexandre Persu (Cardiology Department, Cliniques Universitaires Saint-Luc, Brussels and Lead for the European FMD Registry) are collaborating on a paper regarding coronary tortuosity.
  • A manuscript from the pathology study is being written and will be focused on informing pathologists of SCAD and how to make an accurate diagnosis.
  • Analysis of imaging data is ongoing, working towards publication.
  • The research team will be contacting some SCAD patients for an update on their condition. This will take the form of a brief email, phone call or request to complete a short online follow-up survey. Data collected from this follow-up is essential for understanding patient outcomes.

Dr Adlam added: “There are lots of things in various stages, but I think it will be an exciting year as we publish data from the first phase of the SCAD research.

 

Dr Alice Wood’s sub-study

Dr Alice Wood, Clinical Research Fellow (part funded by Beat SCAD donations), introduced us to the importance of studying sub-groups, including male survivors and those who have had recurrence, at the Beat SCAD Conference in June 2018. Click here to watch the video.

Dr Wood is making great progress and is 30% through studying the male SCAD sub-group and has recently started studying recurrent SCAD cases.

If you are a SCAD patient who fits into any of the sub-study groups and have already registered your interest in participating in research, you do not need to contact Dr Wood. Dr Wood first needs to assess the availability of medical records and imaging before contacting potential patients about participating.

However, there are a few things SCAD patients can do to help Dr Wood…

HOW YOU CAN HELP

If you receive an invitation to participate in the research or to complete a survey, please respond at your earliest convenience – including if you decide not to participate so that the team can update their records and avoid further unnecessary correspondence.

IMPORTANT:

  • We suggest adding the research email (scad@uhl-tr.nhs.uk) to your address book/contacts.
  • Please check your Junk/Spam folders sporadically in case any communication has been filtered out of your Inbox.
  • The research team are only permitted to make three attempts to contact you via email.
  • If the team try to contact you by telephone, the call will show as a private or withheld number.
  • Survey data is crucial to the research – your help to return complete data in a timely manner is greatly appreciated!

Do you know any male healthy volunteers willing to help the research?

Dr Wood is looking to recruit men aged 50-65 who are healthy (i.e. have no known diagnosis of cardiac disease) and are not genetically related to a SCAD patient. See picture below for further details and how to contact Dr Wood.

If you haven’t yet registered your interest in the research and would like to, please click here to follow the instructions.

If you have previously registered and would like to update your details or have further questions, please email the research team on scad@uhl-tr.nhs.ukrather than re registering.