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.

Paramedics learn about SCAD

Paramedics learn about SCAD

Paramedics are often the first healthcare professionals to come to the aid of SCAD patients, so raising awareness in this area is important to ensure they ‘think SCAD’.

Trustee Karen Rockell takes every opportunity to educate people about SCAD, so when an ambulance was called to help her cousin after a bad fall in Oxford while Karen was visiting last September, she wasted no time discussing SCAD with the ambulance crew.

After paramedic Danny Warr and his trainee had treated her cousin, Karen asked if they knew about SCAD. Briefly explaining what it is, Karen gave Danny her contact details and pointed him to the Beat SCAD website for more information.

Fast forward to early 2019 and Emma Roberts from South Central Ambulance Service contacted Karen, having been told about SCAD by Danny. She invited Karen to give a talk about SCAD to 12 paramedics and trainees at the North Oxfordshire Station at Adderbury on 20 February.

Her talk included information about the mechanics and symptoms of SCAD, as well as treatment options. She also told some patient stories to highlight how SCAD affects young, fit people. This was followed by a very lively discussion covering many subjects including genetics, the SCAD research, recurrent SCADs and how paramedics can help SCAD patients by being aware of the symptoms in those who do not have the usual risk factors

Karen said: “Educating two paramedics in September was good, but I was so pleased Danny discussed SCAD with Emma, and that they were so proactive in wanting to learn about the condition.”

Danny told us: “The team really enjoyed it and learnt a lot. We will spread the word.”

 Pictured are the group of paramedics with Karen.

 

SCAD patient educates future doctors

Raising awareness among health professionals is a key mission for Beat SCAD and SCAD patient Louise Pearson has recently been educating medical students at the Royal Derby Hospital, Nottingham University School of Medicine.

Louise was one of four volunteers who took part in an education session for first-year students at the Medical School. The session gives students experience in taking medical histories, learning how to ask open and closed questions, showing empathy while retaining the information to feed back to the group for constructive criticism.

Louise talked about her ‘event’ to four groups of about 12 students and their tutors, without saying that it was SCAD. After her medical history had been taken, the students gave their diagnoses, which included Pulmonary Embolism, angina and an asthma-related attack. Louise then revealed to the group that she had actually had a SCAD.

She said: “There were some very shocked reactions and immediately all the pens were busy making notes!”

The group discussed the reasons Louise’s symptoms pointed to a heart attack and “on some occasions they picked up on how the medics ruled out a heart attack too early in my case”.

She added: “It’s one of the most thrilling experiences to tell the tutors too, because they are usually unaware of SCAD. I did this process four times, so informed around 45 students, half the yearly intake.”

Louise also handed out our SCAD for health professionals leaflet, so the students had a reminder of the unusual case they had tried to diagnose.

Well done and a big thanks to Louise for informing the doctors of the future!

Beat SCAD Trustees attend first UK FMD Information Day

Beat SCAD Trustees attend first UK FMD Information Day

The first UK Fibromuscular Dysplasia (FMD) Information Day was held in Salford on 19 January, hosted by the Fibromuscular Dysplasia Society UK & Ireland.

Many SCAD patients are also diagnosed with FMD so this was an excellent opportunity for the Beat SCAD Trustees to find out more about the condition.

The day was a great example of how patients and SCAD and FMD experts in the medical profession are collaborating in the search for answers.

Melton & District Model Show volunteers

Pictured above (l to r): Dr Martin Punter (Consultant Neurologist), Dr Rekha Siripurapu (Neuroradiologist), Tina Chrysochou (Consultant Nephrologist) and Dr Amit Herwadkar (Consultant Neuroradiologist), all from the Salford Royals Hospitals NHS Foundation Trust, with Karen Rockell (Co-Founder of the FMD Society of UK & Ireland) and Professor Alexandre Persu (Cardiology Department, Cliniques Universitaires Saint-Luc, Brussels and Lead for the European FMD Registry)

The day kicked off with Dr Tina Chrysochou, Consultant Nephrologist, Salford Royal Hospitals NHS Foundation Trust and Lead RADAR FMD Special Interest Group, explaining what FMD is. She explained that FMD causes narrowing and/or enlargement of one or more medium-sized arteries. This can reduce blood flow and affect the function of organs.

FMD is more common in women (approx 80-90%) but does occur in men too. Current figures indicate that it mainly affects arteries leading to the kidneys, but is also found in arteries leading to the neck and brain, heart, abdomen, arms and legs.

The cause is unknown, but it is not an inflammatory condition, nor is it caused by atherosclerosis (furring of the blood vessels). It is not known whether there is a hormonal factor. Some people who have FMD are asymptomatic but others may have complications such as high blood pressure or artery dissections.

Dr Chrysochou discussed the association of FMD with SCAD, saying some figures show 50-75% of SCAD patients also have FMD, but the converse is rare, ie fewer FMD patients have SCAD. Figures from the European FMD Registry show that out of 687 patients, just 78 had SCAD. FMD was familial in just 2% of cases and two-thirds of patients have FMD in more than one vascular bed.

As with SCAD, research is ongoing, and the first Consensus Statement, published recently, was a collaborative project that included FMD and SCAD experts.

 

Following Dr Chrysochou’s very informative presentation, Dr Neeraj Dhaun, BHF Intermediate Clinical Research Fellow & Honorary Consultant Nephrologist, Queen’s Medical Research Institute, Edinburgh, described an unusual presentation of FMD involving a 35-year-old man who was found collapsed in his hotel bedroom. He’d had seven weeks of daily frontal headaches and three weeks of blurred vision. He had very high blood pressure but was a non-smoker and was on no regular medication. He had recurrent seizures, had gone blind and had amnesia. Although a challenging case, the patient was diagnosed with FMD and, once treated, his blood pressure returned to normal and his sight returned.

 

FMD in the neck and head

Dr Amit Herwadkar, Consultant Neuroradiologist, and Dr Martin Punter, Consultant Neurologist, Salford Royals Hospitals NHS Foundation Trust, explained cervico-cephalic (neck and head) FMD. Symptoms of cervico-cephalic FMD are headaches, pulsatile tinnitus and neck pain. Dr Punter said up to 65% of FMD patients may have extracranial cerebrovascular disease (ie carotid or vertebral narrowing outside the skull), often affecting the bilateral internal carotid artery.

Dr Herwadkar explained how imaging (CTA, MRA and Duplex ultrasound) is used to diagnose FMD and ascertain the extent of the disease in the head and neck. He explained that CTA is the first choice imaging or contrast-enhanced MRA is an alternative. Ultrasound would rarely be used as a first diagnostic tool.

 

SCAD and FMD

Dr David Adlam, Chair ESC-ACCA SCAD Study Group, Associate Professor of Acute and Interventional Cardiology, University of Leicester, who is leading the SCAD research project in the UK, presented on the link between FMD and SCAD.

FMD is one of the conditions found in some SCAD patients, along with cervico-cerebral artery dissection (CCeAD), aortic dissection, intracranial aneurysms and connective tissue diseases. The recent finding that a common genetic variant on the PHACTR1 gene is associated with increased risk of FMD, CCeAD, SCAD and migraine is a big step forward in the quest to understand these conditions.

 

Patient perspective

Sally Bee, celebrity chef and wellness coach and FMD and SCAD survivor, gave an uplifting talk to patients, saying it is up to individuals how they react to their diagnosis and that a positive attitude goes a long way. She described how her SCAD in 2004 was a devastating blow to her and her family, including three children under five, but despite the odds she recovered. She was also diagnosed with FMD and had a second SCAD in 2016. A positive attitude and healthy eating has been a cornerstone of her recovery and her daily life.

 

 

FMD Society of the UK & Ireland

Karen Rockell, Founder of the FMD Society of UK & Ireland and Beat SCAD Trustee, told delegates that the society aims to support FMD patients and families and encouraged people to get involved and offer their help.

The delegates finished the day with a workshop to identify what they would like from an FMD clinic and research.

Feedback from the day was very positive and the Beat SCAD Trustees certainly learnt more about FMD and its potential links with SCAD. The presentations have all been filmed, so keep an eye on our Facebook page and that of the FMD Society of UK & Ireland for further information.

The Information Day is a great example of collaboration between SCAD and FMD experts. Pictured below (l to r): Dr David Adlam (Chair ESC-ACCA SCAD Study Group, Associate Professor of Acute and Interventional Cardiology, University of Leicester, who is leading the SCAD research project in the UK), Dr Caitriona Canning, Consultant Vascular Medicine, St. James’s Hospital, Dublin, who has established an FMD and SCAD Clinic, Dr Tina Chrysochou (Consultant Nephrologist) and Professor Alexandre Persu (Cardiology Department, Cliniques Universitaires Saint-Luc, Brussels and Lead for the European FMD Registry)

Melton & District Model Show volunteers
Beat SCAD Charity Golf Tournament raises over £1200

Beat SCAD Charity Golf Tournament raises over £1200

On Sunday 16 September 22 golfers tackled the Collingtree Park Golf Club course in Northampton in the first Beat SCAD Charity Golf Tournament. Paul Bone, husband of SCAD survivor Robyn, organised the event to raise money for research into Spontaneous Coronary Artery Dissection after Robyn’s dramatic SCAD event.

Paul and Robyn Bone

Paul and Robyn Bone

Earlier in the year Paul and his sister Loren had run the Milton Keynes marathon and raised a brilliant £1,900 for Beat SCAD. Having recovered from that, Paul decided on a golf tournament for his next fundraising effort. He began planning the competition, and obtaining prizes for an auction to be held at the post tournament dinner.

Collingtree Park has been a PGA EuroPro Tour venue, so the course was challenging for some. Luckily, on the day the sun shone and although a little bit windy, the weather was kind enough to the golfers as they played in teams of four around the Collingtree Park course. With a variety of abilities among the players the tournament was played under Stableford rules.

At the end of the day, several supporters joined the golfers for a delicious dinner. This was followed by a brief speech by Beat SCAD Trustee Karen Rockell. The winner’s trophy was awarded to Lee McAlister (pictured above with Paul), who also won the Longest Drive competition. The Nearest the Pin trophy went to Brian Juffkins and the final prize went to Lee Ives coming in with the lowest Stableford score of the day.

Finally the evening ended with a Charity Auction. Amongst the prizes Paul obtained was a signed football shirt from Gazza, and various other prizes including several vouchers to play at a variety of golf courses in and around Northamptonshire.

It was a great day, enjoyed by all and a brilliant £1220 was raised for Beat SCAD.

The second Beat SCAD Golf Tournament will be held in May 2019. Keep an eye on the Beat SCAD website, Twitter or Facebook page for more information. Individuals, teams of two or four are invited to enter. For more information please email contactus@beatscad.org.uk