Description
This Action List flags patients who are prescribed hemophilia treatments (factor concentrates, emicizumab, or other hemophilia-specific products) but do not have a recorded hemophilia diagnosis in CBDR. These records represent a fundamental data integrity issue where treatment data exists without the corresponding diagnostic foundation.
Why This Matters
- A patient receiving hemophilia treatment without a recorded diagnosis creates a logical inconsistency in the registry that undermines data quality reporting
- Severity classification depends on a confirmed diagnosis, and severity drives treatment plan appropriateness assessments
- National and provincial utilization reports filter by diagnosis; undiagnosed patients receiving treatment will be excluded from these counts
- CDA DRD real-world evidence analyses require confirmed diagnosis as a baseline inclusion criterion
Remediation Steps
- Verify diagnosis: Review the patient's clinic chart, referral letter, or historical records to confirm the hemophilia diagnosis, type (A or B), and severity (mild, moderate, severe).
- Enter diagnosis in CBDR: Navigate to the Patient Demographics module and record the diagnosis type, severity, and date of diagnosis. If the exact diagnosis date is unknown, use the earliest known date of clinical presentation.
- Assess for non-hemophilia diagnosis: If the patient does not have hemophilia but is receiving factor products (e.g., acquired hemophilia, von Willebrand disease with factor use, or surgical prophylaxis), update the diagnosis field accordingly and review whether the patient belongs in the hemophilia treatment plan module.
- Reconcile treatment records: Once the diagnosis is entered, review the treatment plan and product usage records to ensure they are consistent with the recorded diagnosis and severity.
- Escalate unresolvable cases: If the diagnosis cannot be confirmed from available records, flag the case for review by the HTC medical director.