AICC

Education, training & advice on management and best practice, for inherited cardiac conditions.

Association for Inherited Cardiac Conditions (AICC)

Association for Inherited Cardiac ConditionsWe aim to provide consistent, top quality education and training, advice on management and best practice, as well as acting as a forum for data collection, audit and collaborative research. Membership is open to clinicians, nurses, counsellors, scientists and professions allied to medicine, as well as to persons from organisations and charities involved in support of such families.

Management of inherited cardiac conditions is currently one of the most rapidly evolving areas in cardiology. The last decade has seen a major change in our recognition of these conditions from apparently rare isolated disorders, to a group which collectively are common and which may be associated with the tragedy of unnecessary sudden death.

Contact: aicc@bcs.com

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AICC Council

Jan Till - President

Jan Till

Jan is current president of the AICC, having served as a council member for some years and is passionate about raising awareness and identifying ways in which we can improve care of patients and families living their lives with ICC. Her major interest is device treatment, genetics and management of channelopathies.

Jan works at the Royal Brompton Hospital - where she helped build the inherited cardiac conditions unit - as a consultant in congenital electrophysiology and is Co-Director of Childrens’ services at the Trust, and leads in Channelopathies, caring for both adults and children with channelopathies.

Catherine Mercer - Secretary

Catherine Mercer

Melanie Watson – Treasurer

Alyssa Armsby - Genetic Counsellor

Alyssa Armsby

Alyssa is a principal cardiac genetic counsellor with the Oxford ICC Service, funded by the BHF Miles Frost Fund. She is originally from Toronto, Canada and completed her genetic counselling training at Stanford University. She is keen on promoting the integration of genomics and its implications for patients and families into the ICC clinic, expanding genetic counsellor contribution to research, and developing the role and aims of genetic counselling, as well as that of other allied healthcare professionals within the ICC team. She has collaborated with ICC specialists from centres across the UK to share successes and challenges, and develop strategies to ensure equity of access and standardisation of services.

Claire Turner - Consultant Clinical Geneticist

Gerry Carr-White - Cardiologist

John Dean - Geneticist

John Dean

John Dean is a Consultant in Clinical Genetics for NHS Grampian, based in Aberdeen. He is also Joint Lead Clinician for the Network for Inherited Cardiac Conditions Scotland. His special interests include Long QT syndrome, Marfan Syndrome and the molecular investigation of Sudden Cardiac Death. He is Emeritus Reader in Medicine at the University of Aberdeen.

Juan Kaski - Paediatric Cardiologist

Juan-Pablo Kaski

Dr Kaski is Associate Professor of Paediatric Inherited Cardiology at the UCL Institute of Cardiovascular Science and Consultant Paediatric Cardiologist at Great Ormond Street Hospital (GOSH), London, UK. He is the Director of the GOSH Centre for Inherited Cardiovascular Diseases, which sees over 6000 children with, or at risk of, inherited cardiac conditions from around the UK every year. Dr Kaski’s clinical and research interests are focused on the clinical and genetic characterisation of inherited cardiovascular disease and sudden cardiac death in childhood and he won the Young Investigator Award for Clinical Science from the European Society of Cardiology in 2008 for his work on the genetic basis of pre-adolescent hypertrophic cardiomyopathy (HCM). He is the current Chair of the Association for European Paediatric Cardiology (AEPC) Working Group on Genetics, Basic Science and Myocardial Disease and sits on the Executive Board of the European Society of Cardiology (ESC) Cardiomyopathy and Myocarditis Registry Programme and the ESC Council on Cardiovascular Genomics. He leads an international paediatric HCM consortium of over 45 centres, which was responsible for the development of the first sudden death risk prediction model for childhood HCM.

Lynne Millar - Trainee Representative Cardiology

Saidi (Sam) Mohiddin - Cardiologist

Sam Mohiddin

Consultant Cardiologist in Inherited and Acquired Heart Muscle Disease and in Cardiac Magnetic Resonance Imaging, Barts Health NHS Trust.

Sam Mohiddin trained in Edinburgh, in the USA at the National Institutes of Health and in London. He completed his training in Cardiology in 2010 and is a Consultant and Honorary Clinical Senior Lecturer at the Barts Heart Centre. Sam was a lead author of the national training curriculum for Inherited Cardiac Conditions and has an active role in sub-specialty education.

He has active research interests in inflammatory (myocarditis) and inherited heart muscle diseases and in the use of Cardiac resonance imaging (Cardiac MRI) in the assessment of these & other conditions.

Stephen Page - Cardiologist

Stephen Page

Stephen Page is a Consultant Cardiologist & Electrophysiologist at Leeds General Infirmary.

He trained in Newcastle before moving to London to train as a cardiologist. His MD in hypertrophic cardiomyopathy at The Heart Hospital introduced him to the world of inherited cardiac conditions, before training in electrophysiology and inherited arrhythmia syndromes at Barts. He now leads the Inherited Cardiovascular Conditions Service in Leeds. His main focus is on clinical service development but is research active with established links with Imperial College and St George’s University.

Nora Shannon - Consultant Clinical Geneticist

Mary Sheppard - Cardiac Pathologist

Kate Thomson - Allied Health Professional

Kate is an experienced Clinical Scientist and a Fellow of the Royal College of Pathologists. She has specialised in inherited cardiac conditions for over 17 years, and is the lead for inherited cardiac disorders in the Oxford Medical Genetics Laboratory (OMGL). She recently completed a DPhil in Cardiovascular Medicine at the University of Oxford, where her research focused on the genetic basis of inherited cardiomyopathies.

Claire Turner - Consultant Clinical Geneticist

Rachel Walker – Genetic Nurse

Rachel Walker

Rachel has 23 years’ experience working in within cardiology, most recently as ICC nurse specialist in the South Yorkshire Regional ICC service for the last 13 years.

Her long experience of running nurse-led clinics has given her an intimate understanding of the needs of ICC patients and their families and the unique nature of the care they need.

Her role was initially funded by Cardiomyopathy UK and subsequently had the opportunity to work for their helpline for a number of years. This gave her an appreciation of the variations in the availability of ICC care throughout the country and the need for national approach to its management.

Although Rachel works with all ICCs, she has a particular interest in heart muscle disease.

Eleanor Wicks - Cardiologist

Eleanor Wicks

Dr Wicks is a Consultant Cardiologist and the Clinical Lead of the Inherited Cardiac Conditions (ICC) service at Oxford University Hospitals with longstanding specialist interests in acquired and inherited conditions, genomics, heart failure (HF) and multimodality imaging. She studied Medicine at the University of Edinburgh, United Kingdom. After qualifying in 2004, she trained in General Medicine, gaining membership of the Royal College of Physicians in 2009 and completed her general cardiology training at Barts Heart Centre, London, UK. She was appointed as a Consultant Cardiologist with dual accreditation in General Medicine in 2016 and moved to Oxford to become clinical lead of the HF and ICC service in 2017. In 2019 she became an Honorary Senior Clinical Lecturer at the University of Oxford.

Over the past 5 years she has established a national and international reputation in the field of HF and heart muscle disease, authoring >10 peer reviewed papers on the subject. She sits on the ESC Working Group for Myocardial and Pericardial Diseases, the executive committee for the Cardiomyopathy UK charity and the Association of Inherited Cardiovascular Conditions (AICC). She was instrumental as the registry fellow for the European Outcomes Research Programme (EORP) registry on cardiomyopathies. At a day-to-day level, she combines her energy and enthusiasm with clinical leadership and service delivery with the operational management of a UK flagship, large multidisciplinary, multi-professional specialist team providing integrated cardiomyopathy evaluation alongside DNA diagnostics as one of the UK’s genomic hubs. She harnesses clinical and academic synergy via a collaborative network to define disease mechanisms and ensure the translation of novel molecular biological and clinical research approaches into clinical practice which has transformed the care for families nationally. She utilises state-of-the-art genomics and imaging for rich phenotyping to help reveal the molecular, imaging and genetic basis of inherited and acquired heart diseases in search of improved diagnoses, streamlined clinical screening, risk stratification and the exploration of potential therapeutic targets in the hope of delivering personalised therapy with substantial benefits for patients.

Eleanor hopes to propel forward innovative, holistic redesign of services to exceed quality standards and deliver optimal comprehensive services to improve the diagnosis, therapy and risk stratification of cardiomyopathies whilst integrating collaborative, pioneering research routinely in clinical practice. Her business, governance and technical mindset embraces automation and AI and hopes to integrate these concepts within clinical practice to ensure the sustainability, transformation and financial efficiency of her services.

The AICC wish to provide some guidance for its members in advising their patients with ICCs about COVID-19. This advice is consistent with that submitted to Specialist Commissioning and expected to be available on-line from NHS England and through 111.

All patients should follow relevant government advice on COVID-19 provided by the 111 website and call line.

Patients who are at increased risk of complications of infection who will require strict self-isolation to reduce the chance of contracting the virus:

  1. Dilated, arrhythmogenic and hypertrophic cardiomyopathy patients with LV impairment and/or symptomatic left heart failure.
  2. Arrhythmogenic cardiomyopathy patients with RV impairment and/or symptomatic right heart failure.
  3. Symptomatic hypertrophic cardiomyopathy with or without significant obstruction.

Patients who may require special instructions:

  1. All patients with Brugada syndrome and/or sodium channel disease should self-treat with paracetamol immediately if they develop signs of fever and self-isolate.
  2. If patients with Brugada syndrome and/or sodium channel disease without an ICD, especially those with a spontaneous type 1 pattern, develop a high fever (>38.5C) despite paracetamol, they should contact 111 by phone, stating their condition, and may need to attend A+E*. A+E will need to be advised either by 111 or by the patient that they will attend to allow assessment by staff with suitable protective equipment. Assessment should include an ECG** and monitoring for arrhythmia. If an ECG shows the type 1 Brugada ECG pattern, then the patient will need to be observed until fever and/or the ECG pattern resolves. If all ECGs show no sign of the type 1 ECG pattern, then they can go home to self-isolate. Patients with fever who have an ICD can isolate at home and follow guidance provided by 111.

* A+E attendance may be regulated according to the capacity of service and risk of COVID-19 infection.

** ideally three different ECGs with V1 and V2 in the 4th, 3rd and 2nd intercostal spaces should be taken.

Long QT syndrome patients infected with COVID-19 who receive antivirals and/or chloroquine/hydroxychloroquine will require ECG monitoring in case of exacerbation of QT prolongation and increased risk of arrhythmias during therapy.

AICC 2021 Virtual Conference

The 2021 AICC Conference took place on Friday 5 March.

You can now view the talks online and we would be grateful if you could please complete our feedback form.

The next annual meeting will be on Friday 03 December 2021, further details to be announced.