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The relevance of the study will be in establishing whether Health Related Quality of Life (HRQoL) measures obtained repeatedly during hemophilia care are sensitive to significant changes in health or personal circumstances related to the transition from youth to adulthood. This may support the future use of HRQoL measures as part of routine care in order to identify important changes that are not detectible by other clinical means.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients | Patients who have moderate or severe Hemophilia A, living in Canada and who are using Helixate FS either on-demand or prophylaxis |
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| Measure | Description | Time Frame |
|---|---|---|
| Health Related Quality of Life (HRQoL) | Every 6 months over 2 to 3 years |
| Measure | Description | Time Frame |
|---|---|---|
| Sensitivity of HRQoL measures to significant life events | 3 years |
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Inclusion Criteria:
Exclusion Criteria:
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The study is focused on youth (14.0 to 18.0 years of age) and young adults (18.01 to 29.99 years of age), living in Canada, who have moderate and severe Hemophilia A, and who are using Helixate FS either on-demand or as prophylaxis treatment.
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| Name | Affiliation | Role |
|---|---|---|
| Jean St-Louis, MD | St. Justine's Hospital | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Sick Kids Hospital | Toronto | Ontario | M5G 1X8 | Canada | ||
| CHU Sainte-Justine |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 27158500 | Derived | St-Louis J, Urajnik DJ, Menard F, Cloutier S, Klaassen RJ, Ritchie B, Rivard GE, Warner M, Blanchette V, Young NL. Generic and disease-specific quality of life among youth and young men with Hemophilia in Canada. BMC Hematol. 2016 May 5;16:13. doi: 10.1186/s12878-016-0052-x. eCollection 2016. |
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| ID | Term |
|---|---|
| D006467 | Hemophilia A |
| ID | Term |
|---|---|
| D025861 | Blood Coagulation Disorders, Inherited |
| D001778 | Blood Coagulation Disorders |
| D006402 | Hematologic Diseases |
| D006425 | Hemic and Lymphatic Diseases |
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| Montreal |
| Quebec |
| H3T 1C5 |
| Canada |
| D020147 | Coagulation Protein Disorders |
| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |