title: How to develop a clinic for sudden cardiac arrest survivors and families of non-survivors.
abstract: The investigation of the aetiology of sudden cardiac arrest or death in a young person combines features of a traditional clinical medical examination with those of forensic medicine. Nuances of the immediate peri-event history, when available, can be paramount. New genetic tools have greatly improved the yield of such investigations, but they must be carefully interpreted by genetic specialists. The approach to surviving patients, their family members, and to family members of non-survivors is best achieved in a structured programme that includes all appropriate specialists and support personnel. As an example, this may include all appropriate paediatric and internal medicine specialists, a geneticist, a genetic counsellor, a clinical psychologist, nurse specialist(s), and a programme coordinator. This family-centred strategy affords the patient, if surviving, and all family members the necessary emotional and medical support while at the same time providing the necessary diagnostic and therapeutic approaches.
authors.affiliation: Inherited Cardiac Arrhythmia Program & Division of Cardiac Electrophysiology,Boston Children's Hospital,Boston,Massachusetts,United States of America.
authors.forename: Dominic J
authors.initials: DJ
authors.lastname: Abrams
mesh_terms: D016757:Death, Sudden, Cardiac; D019468:Disease Management; D004562:Electrocardiography; D005190:Family; D020022:Genetic Predisposition to Disease; D005820:Genetic Testing; D006298:Health Services Administration; D006801:Humans; D008133:Long QT Syndrome / Q000235:genetics; D010808:Physical Examination; D017741:Survivors
keywords: Sudden cardiac death; cardiomyopathy; channelopathy; genetic testing; sudden cardiac arrest