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!

Beat SCAD virtual event 7 November 2020

It’s our fifth birthday! Join us for a research update from the UK SCAD experts, celebrate our achievements over the past five years and hear about our plans for the future!

When: Saturday 7 November at 10am

Tickets: £10 per person Click here to register

Five years ago, patient-led charity Beat SCAD was launched by founding Trustees Rebecca Breslin, Karen Rockell and Debbie Oliver. In 2018 they were joined by Harriet Mulvaney and Sarah Coombes. 

Five years on we have raised awareness, supported those affected by SCAD and donated thousands of pounds to further research into this potentially devastating condition. All while watching the UK and Ireland SCAD online survivor community grow to more than 800 people.  

Do join us for:

  • A review of our achievements to date and a first glimpse of what the next five years will look like
  • Research updates from Dr David Adlam and Dr Alice Wood
  • Q&A session – click here to submit your questions in advance so that we can cover as many subjects as possible on the day.

The event will be hosted via Zoom, so you will need a broadband connection to take part. If you don’t already have Zoom on your device, you can download it here for free: https://zoom.us/ 

Click here to register for the event

We look forward to seeing you. 

The Beat SCAD Trustees. 

Mum & Baby app includes SCAD information

The Mum & Baby app, created by NHS Central London, now includes information about SCAD and heart health.

Back in January, when Trustees Sarah Coombes and Karen Rockell attended the London Maternity and Midwifery Festival, they were approached by Fiona Ghalustians, Senior Project Manager, Maternity Transformation Programme, North West London Collaboration of CCGs, who was updating content in the Mum & Baby app.

She asked if we could provide some information about heart health and pregnancy, including SCAD, for the app, which is produced by the NHS Central London (Westminster) CCG (Clinical Commissioning Group). The app is for women who are pregnant or have given birth and helps them navigate their maternity care choices in England. Downloads for previous versions have topped 10,000.

The most recent MBRRACE report, published in December 2019 and covering 2015-17, found that while giving birth in the UK is very safe, heart disease remains the leading cause of death, accounting for 48 (23%) of the 209 deaths reported during pregnancy and up to six weeks after giving birth out of the 2.28 million women who gave birth during this time period.

The report noted that heart disease can occur for the first time in pregnancy, so including information about heart health in this app was very timely.

Indigestion symptoms that don’t respond to indigestion remedies, chest pain, severe breathlessness or a persistently racing heart are all red flags that should be investigated.

We were very pleased to be able to provide content for both a general Heart Health section and separate sections about SCAD in pregnancy or the post-partum period.

The app can be downloaded from the iTunes or Google Play stores.

Beat SCAD was delighted to have been involved in this project, in the same year that detailed information about SCAD was included for the very first time in The Myles Textbook for Midwives 17th Edition. Both projects have raised awareness of SCAD among midwives and the general public.

Christmas card winners

We have great pleasure announcing the winners of our Christmas card competition.

Thanks to everyone who entered. There were some fantastic entries and the judges found it very hard to choose the winners. But we eventually decided on four winning designs.

They are…

Jo Davies, with her Holly and heart berries design using the Beat SCAD heart icon.

Oliver Heaton, aged 8, whose fun design features painted red-nosed reindeer.

Sarah Mackay, with a beautiful Sledging drawing and a clever use of part of the Beat SCAD logo as a tree.

Taegan Webley, aged 15, who has also referenced the Beat SCAD logo and added hanging heart decorations.

Congratulations to you all. Your designs will be winging their way to the printers shortly and will be available in the shop in late September.