The case for neurological registry best practice guidelines in Canada.

Why are neurological conditions so important to Canadians? In 2005, The World Health Organization (WHO) reported that neurological conditions account for over 6% of the global burden of disease.1 The relative contribution of neurological conditions is greater in high income countries such as Canada.1 The burden of neurological conditions is substantial because many: (1) are chronic and lack curative therapies; (2) occur or manifest throughout the lifespan (e.g. epilepsy, traumatic brain injury); (3) follow a progressive course; (4) lead to functional limitations; and (5) require significant healthcare resources and caregiver investment. The WHO predicts that the healthcare burden from neurological conditions will increase over the next 20 years. Estimated total deaths attributed to neurological conditions are predicted to rise by approximately 0.6% by 2030 while estimated total disability is predicted to rise by about 0.5%.1 A recent report from the Canadian Institute for Health Information (CIHI) focusing on 11 neurological conditions reported that in Canada: (1) the total cost of these conditions ($8.8 billion) represented 7% of the total attributable cost of all illness while nine of the 11 conditions accounted for 8.3% of the total indirect cost of illness ($6.5 billion per year) in 2000-2001; (2) six of the 11 conditions accounted for 10.6% of the total disability adjusted life years in Canada; (3) in 2004-2005, nearly 20% of patient days in Canadian acute care hospitals were for persons affected by one of the 11 conditions and (4) in 20052006, 50% of complex continuing care stays were for patients with Alzheimer’s disease (AD), amyotrophic lateral sclerosis (ALS), cerebral palsy (CP), epilepsy, traumatic brain injury (TBI), multiple sclerosis (MS), Parkinson’s disease (PD) or stroke.2