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!