Using Administrative Health Data to Identify Patients with NF1 in Ontario, Canada, and to Assess Prevalence, Mortality, and Health Care Utilization Patterns

We are using electronic medical records and administrative database to study health care use of people living with NF1 in Ontario, Canada. Using electronic medical record database (EMRPC, previously called EMRALD), we estimated a minimum prevalence of NF1 between 1:2532 to 1:3851. A previously developed billing algorithm has poor performance and wont allow proper assessment of health utilization patterns. Therefore, we have moved forward with a mitigation strategy, whereby we have created a registry of people with confirmed NF1 followed at tertiary centers This registry will be liked to administrative database, and matched to healthy controls to compare mortally and use of health care. We are also studying mortality and healthcare use in patients identified through electronic medical records, using EMRPC and UTOPIAN databases.