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!