What is the CASPER Study?
CASPER (Cardiac Arrest Survivors with Preserved Ejection Fraction Registry) is a national study in Canada that aims to detect rare genetic conditions in children and adults with an unexplained cardiac arrest, as well as their family members. Such conditions, which can go undetected, can lead to cardiac arrest and sudden death. Anyone over the age of 12 may participate if they have survived an unexplained cardiac arrest due to ventricular arrhythmia and their first degree family.
Dr Andrew Krahn is the Project Lead for the CASPER Registry which is funded by Boston Scientific Canada, Medtronic Canada and the Heart and Stroke Foundation of Canada. In October of 2012 he was appointed the new Head of the Division of Cardiology in the UBC Faculty of Medicine, as well as Head of the Vancouver General Hospital Pacemaker Clinic. Dr Krahn was recruited from the University of Western Ontario and is an internationally recognized expert in the management of cardiac arrhythmia, the genetic causes of arrhythmia, causes of loss of consciousness and implantable heart rhythm devices. He has published 245 papers in peer-reviewed journals, and is the president of the Canadian Heart Rhythm Society. He sees patients in the Inherited Arrhythmia Clinic at St Paul’s Hospital here in Vancouver and I was referred to him last year as mine was a difficult case.
I had an unexplained cardiac arrest in January of 2012 that resulted in the implanting of an ICD, the first few months of recovery were normal then one morning I experienced a shock in my sleep. I woke up groggy and confused and it wasn’t until the device alarm sounded that I had any idea what was wrong. Over the course of the next 10 months, I would have a total of 28 shocks, some came alone, some came in storms but every one of them happened in the morning and while I was at rest. During my many hospital admissions I would be prescribed most of the common arrhythmia drugs, many would not work at all and some would work for a short period of time, life was difficult. My official diagnosis is Idiopathic Ventricular Fibrillation and I continue to have issues to this day.
I am by nature a very curious person so when I was asked if I wanted to participate in the study my decision was quick and easy. Not only might it answer some of the questions around my case but it’s a way that I can give back with the hope that something positive will come from all I have been through. Sure, I have privacy concerns but my desire to make a difference outweighs any of that. In fact, I also decided to sign the optional consent form for the DNA BioBanking study, where a small sample of my blood is stored as DNA and RNA (ribonucleic acid) for future use in other research studies, I was honoured to be the first donor to the British Columbia BioBank last February.
Where the goal of the main CASPER study is to collect healthcare information from individuals to better help inform cardiologists and other healthcare professionals on how to diagnose and treat individuals with the cardiac arrest the BioBank study helps to identify variations in genes that may cause cardiac arrest. The fact that some people experience unexplained cardiac arrest may also be caused by slight variations in the structure of the genes and many of the genes that may cause cardiac arrest have not yet been identified. My hope is that by allowing researchers to study my blood, there can be a better understanding around my case and wouldn’t be cool if they identified something they’ve never found before? I think so.
The goal is to enroll 800 participants in the CASPER registry nationwide, currently there are 600.