Eliane Kim, Erin Graves, Lanre Tunji Ajayi, Jacob Pendergrast
While it is recognized that the number of sickle cell patients in Canada is significant and growing, the absence of a unified patient registry has limited the ability of health care workers and policy analysts to determine how many individual patients there are.
By cross-referencing inpatient and outpatient health services administrative databases maintained by Ontario hospitals with a) ICD codes indicating a diagnosis of sickle cell disease and b) individual Ontario Hospital Insurance Plan (OHIP) numbers, it will be possible to approximate the total number of patients residing in the province with a diagnosis of sickle cell disease.
For the period ranging from FY 2007/08-2016/17, the Ontario Discharge Abstract Database and National Ambulatory Care Reporting System were queried for ICD9 code 2826 and ICD10 codes D570, D571, D572, and D578, while the Newborn Screening Ontario database was queried for diagnoses of Hb SS, Hb Sß, SC, SE, and S/HPFH. Duplicate entries were eliminated through cross-referencing of OHIP numbers. The final report was anonymized to patient-level information but included basic demographic information obtained from the Registered Persons Database and Postal Code Conversion File.
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