CHR 2014

DATA SUMMARIES

The summaries below include data on all individuals registered with Canadian hemophilia clinics. All individuals in Canada who use coagulation factor concentrates regularly, i.e. those most severely affected, are accounted for.

Patients with inhibitors (antibodies to factor VIII or IX), are classified according to the severity of hemophilia prior to the development of inhibitors. In some, the prior severity is not known, and these are designated as ‘unknown’ (severity).

The most recent comprehensive national audit was completed in May 2005. Between major audits, data is received voluntarily from individual clinics without a specific specified schedule, though ongoing maintenance of data is strongly encouraged.

The data is compiled on the dates specified at the head of each report, and in the file name. Adobe Reader software is required to view the reports.

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INDIVIDUALS WITH FACTOR VIII DEFICIENCY

1. CHRVIII140415 (PDF April 15, 2014)
'Hemophilia A' grouped by:

A. Severity (Severe ≤1%, Moderate = 1-5%, Mild ≥ 5%); and

B. Age, according to Statistics Canada age groups; and

C. Gender (females can be registered if factor levels are ≤40%).

2. CHRVIII140415b (PDF April 15, 2014)
Same as 1, but age grouped according to pediatric (<18 years) & adult (≥18 years ).

INDIVIDUALS WITH FACTOR IX DEFICIENCY

3. CHRIX140415 (PDF April 15, 2014)
'Hemophilia B' grouped as for those with factor VIII deficiency.

4. CHRIX140415b (PDF April 15, 2014)
Same as 3, but age grouped according to pediatric (<18 years) & adult (≥18 years ).

INDIVIDUALS WITH VON WILLEBRAND FACTOR DEFICIENCY

5. CHRVWD140415 (PDF April 15, 2014)
Grouped by age and by type.

6. CHRVWD140415b (PDF April 15, 2014)
Same as 5, but age grouped according to pediatric (<18 years) & adult (≥18 years ).

STATUS OF INDIVIDUALS INFECTED WITH HIV

7. CHRHIVstatus20140415 (PDF April 15, 2014)
Originally, HIV infection occuring during the early 1980's was documented in 657 individuals. This number has expanded to 671 through immigration.

RARE INHERITED COAGULATION DISORDERS

8. CHRRareCoag140415 (PDF April 15, 2014)
Rare Inherited Coagulation Disorders grouped by:

A. Factor deficiency; and

B. Severity (Severe ≤1%, Moderate = 1-5%, Mild ≥ 5%); and

C. Age, according to Statistics Canada age groups; and

D. Gender (females can be registered if factor levels are ≤40%).

9. CHRRareCoag140415b (PDF April 15, 2014)
Same as 8, but age grouped according to pediatric (<18 years) & adult (≥18 years ).

RARE INHERITED PLATELET DISORDERS

10. CHRRarePlateletDis140415 (PDF April 15, 2014)
Rare Inherited Platelet Disorders grouped by:

A. Diagnosis

B. Age, according to Statistics Canada age groups; and

C. Gender

11. CHRRarePlateletDis140415b (PDF April 15, 2014)
Same as 10, but age grouped according to pediatric (< 18 years) & adult (≥18 years).

INDIVIDUALS WITH C1 ESTERASE INHIBITOR DEFICIENCY

12. CHRC1EI140415 (PDF April 14, 2014)
Grouped by age and gender

INDIVIDUALS WITH CONGENITAL HYPOGAMMAGLOBULINEMIA

13. CHRHypogam140415 (PDF April 15, 2014)
Grouped by age and gender