Term

Definition

ABR

Annualized Bleeding Rate. The number of bleeding episodes a patient experiences over a 12-month period, used as a primary efficacy outcome for hemophilia treatments.

CBDR

Canadian Bleeding Disorders Registry. The national patient registry for bleeding disorders in Canada, maintained across 26 Hemophilia Treatment Centres.

CD-QAS

Clinical Data Quality Audit & Action System. The web-based dashboard described in this Knowledge Base.

CDA-AMC

Canada's Drug Agency (formerly CADTH). The national body responsible for health technology assessment and drug reimbursement recommendations.

DRD

Drugs for Rare Diseases. A CDA-AMC program that funds evidence generation and registry infrastructure for rare disease therapies.

EMR

Electronic Medical Record. The hospital or clinic-based patient record system used alongside CBDR.

EQ-5D

EuroQol 5-Dimension. A standardized patient-reported outcome instrument measuring health-related quality of life across five dimensions.

HJHS

Hemophilia Joint Health Score. A validated physical examination tool that scores joint health across six index joints (elbows, knees, ankles). Lower scores indicate better joint health.

HTC

Hemophilia Treatment Centre. A specialized clinical centre providing comprehensive care for patients with bleeding disorders. Canada has 26 HTCs participating in CBDR.

ITI

Immune Tolerance Induction. A treatment protocol using high-dose factor concentrate to eliminate inhibitors (antibodies against clotting factor).

MyCBDR

The patient-facing portal of the CBDR system, used by patients to log treatments, bleeds, and other health information.

PROBE

Patient Reported Outcomes, Burdens and Experiences. A hemophilia-specific quality of life instrument developed by the World Federation of Hemophilia.

PRO

Patient-Reported Outcome. Health outcomes reported directly by patients, including quality of life, pain, and functional status measures.

siRNA

Small interfering RNA. A class of therapeutic molecule that silences specific gene expression. Fitusiran uses siRNA to reduce antithrombin production.

SSO

Single Sign-On. An authentication method allowing users to access CD-QAS using their existing CBDR credentials without a separate login.

TFPI

Tissue Factor Pathway Inhibitor. A natural anticoagulant protein. Anti-TFPI antibodies (concizumab, marstacimab) restore hemostasis by blocking TFPI activity.

VAS

Visual Analogue Scale. A measurement instrument for subjective characteristics such as pain intensity, typically scored 0-100.