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2020 World Bleeding Disorders Registry (WBDR) Data Report: Global Hemophilia Care And Research.pdf

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Preview of 2020 World Bleeding Disorders Registry (WBDR) Data Report: Global Hemophilia Care and Research
🔗 Source: www1.wfh.org
📊 Size: 2 MB
📄 Pages: 48 pages
⬇️ Downloads: 53

Summary

The 2020 Data Report from the World Bleeding Disorders Registry (WBDR) under the World Federation of Hemophilia (WFH) presents a global snapshot of people with hemophilia (PWH). Key points include:

- Global Reach: As of December 31, 2020, data from over 7,000 PWH across 86 hemophilia treatment centers in 33 countries are included.

- Data Collection: The report utilizes both aggregate and de-identified data from PWH who consented to have their information entered into the WBDR.

- Mission: The WFH aims to improve and sustain care for individuals with inherited bleeding disorders worldwide, emphasizing "Treatment for All."

- Key Findings:

- Demographics: Data reflects a diverse population with varying hemophilia types and severities.
- Diagnosis & History: Age at diagnosis and first bleed vary, highlighting the need for early detection.
- Comorbidities & Employment: Information on comorbidities and educational/employment status provides valuable context.
- Clinical Data: Details on bleeding events, joint bleeds, inhibitors, hospitalizations, and treatment regimens offer insights into real-world management.

- Data Quality & Integration: The report emphasizes robust data governance, privacy measures, and international data integration efforts to ensure accurate and meaningful insights.

- Collaborations: Thanks to partnerships with pharmaceutical companies and collaborating organizations, the WBDR continues to grow and enhance its impact.

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Description

The 2020 Data Report from the World Federation of Hemophilia (WFH) and World Bleeding Disorders Registry (WBDR) provides global insights into hemophilia and bleeding disorders, covering patient demographics, diagnosis, clinical history, comorbidities, and data quality.

Technical Information

  • File Format: PDF
  • File Size: 2 MB
  • Pages: 48
  • Language: EN
  • Total Downloads: 53
  • Last Updated: 2 weeks ago

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