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| ID | Type | Description | Link |
|---|---|---|---|
| EPOCH Study, Ltd. | Other Grant/Funding Number | EPOCH Study, Ltd. |
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| Name | Class |
|---|---|
| EPOCH Study, Ltd. | UNKNOWN |
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The overarching goal of the EPOCH project is to:
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| Measure | Description | Time Frame |
|---|---|---|
| Successfully registered research centers | Successfully registered research centers in Trial Phase | Baseline until week 52 |
| Number of enrolled patients | Number of enrolled patients in Trial Phase | Baseline until week 52 |
| Proportion of completed questionnaires | Proportion of completed questionnaires for the Trial Phase | Baseline until week 52 |
| Proportion of missing data | Proportion of missing data for the Trial Phase | Baseline until week 52 |
| Qualitative information on study barriers and facilitators | Qualitative information on study barriers and facilitators for the Trial Phase | Baseline until week 52 |
| Diagnostic and treatment burden for hemophilia patients | Diagnostic and treatment burden for hemophilia patients for the Implementation Phase | Baseline until week 52 |
| Costs of hemophilia diagnosis and treatment | Costs of hemophilia diagnosis and treatment for the Implementation Phase | Baseline until week 52 |
| Measure | Description | Time Frame |
|---|---|---|
| Measure treatment patterns and their variability | Measures of treatment patterns will be defined by type of treatment product, dose and frequency of administration. These measures will be considered in relation to severity of disease and eventually presence of inhibitors and relevant comorbidities. This measure will be collected both cross-sectionally and prospectively and reported directly by the patients. By organizing patient-level data and applying statistical analysis methods, we calculated the total cost of hemophilia diagnosis and treatment in China and specific regions. |
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Inclusion Criteria:
Exclusion Criteria:
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Male patients, aged ≥12 years at the index date
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Instiute of Hematology and Blood Diseases Hospital CAMS＆PUMC | Tianjin | Tianjin Municipality | 300020 | China |
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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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| Baseline until week 52 |
| Measure levels of access to care | The access to care will be calculated considering the mean number of visits/consultations/follow-ups and hospitalizations for patient and stratified in relation to severity of disease, frequency of bleeding and presence of inhibitors/comorbidities and haemophilia related complications or health problems. | Baseline until week 52 |
| Estimate the impact of haemophilia and its treatment on patients reported outcomes | General health problems are defined by determinants like use of mobility aids and assistive devices, use of pain medication, presence of and how acute pain and chronic pain interfere with daily life, difficulty with daily activities, surgical history and concurrent medical problems and work/school life. Haemophilia-related health problems refer to disease severity, inhibitor status and history, bleeding frequency and history, treatment regimen and history and presence of target joint(s) | Baseline until week 52 |
| D020147 | Coagulation Protein Disorders |
| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |