CHR 2016

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.

Inhibitor status was not tracked after 2014.

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.

This data was compiled based on information in CHR in August of 2018. Adobe Reader software is required to view the reports.

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INDIVIDUALS WITH FACTOR VIII DEFICIENCY

1. FVIII stats can 2016
'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. FVIII ped adult 2016
Same as 1, but age grouped according to pediatric (<18 years) & adult (≥18 years ).

INDIVIDUALS WITH FACTOR IX DEFICIENCY

3. FIX stats can 2016
'Hemophilia B' grouped as for those with factor VIII deficiency.

4. FIX ped adult 2016
Same as 3, but age grouped according to pediatric (<18 years) & adult (≥18 years ).

INDIVIDUALS WITH VON WILLEBRAND FACTOR DEFICIENCY

5. VWD stats can 2016
Grouped by age and by type.

6. VWD ped adult 2016
Same as 5, but age grouped according to pediatric (<18 years) & adult (≥18 years ).

STATUS OF INDIVIDUALS INFECTED WITH HIV

7. No longer tracked in CHR.

RARE INHERITED COAGULATION DISORDERS

8.RareCoag stats can 2016
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.RareCoag ped adult 2016
Same as 8, but age grouped according to pediatric (<18 years) & adult (≥18 years ).

RARE INHERITED PLATELET DISORDERS

10. RarePlate stats can 2016
Rare Inherited Platelet Disorders grouped by:

A. Diagnosis

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

C. Gender

11. RarePlate ped adult 2016
Same as 10, but age grouped according to pediatric (< 18 years) & adult (≥18 years).

INDIVIDUALS WITH C1 ESTERASE INHIBITOR DEFICIENCY

12. C1Est stats can 2016
Grouped by age and gender

INDIVIDUALS WITH CONGENITAL HYPOGAMMAGLOBULINEMIA

13. HypGG stats can 2016
Grouped by age and gender