Grant: Planning and Dissemination Grant - Institute Community Support

When a person's heart stops suddenly, most people die (called sudden cardiac death). The cause is important to identify, because some heart problems can be inherited from parents to children and other first degree relatives (FDR) who may be at-risk. There are special inherited arrhythmia clinics (IACs) with heart doctors and genetic experts to test these FDRs to find out if they have the same disease as the person who died ("cascade screening"). In many cases, these FDR can be treated and deaths prevented. Our previous work with FDRs showed that many of them had no idea that they needed to have their hearts tested. Another problem is that FDRs need to ask their family doctors for a referral, but we don't know if family doctors know about these IACs and how to refer to them. Also lack of IACs in rural and northern areas of Ontario, make it hard for FDR who live there to receive care. All of these are big problems that can prevent FDRs from receiving proper care, but we don't know what the best solutions might be. We need to consult with experts in heart problems, genetic experts, coroners, decision-makers in government, FDRs, patients with heart problems and other stakeholders to figure out the right approaches. This grant will support a 2-day meeting in Toronto where all these stakeholders will talk about what they think are the main problems that need to be fixed and what the best solutions might be. We will develop research questions and use the top 5-10 ideas ranked as most important by from the group to plan for future research projects and begin work on new funding applications.