World Bleeding Disorders Registry
The World Bleeding Disorders Registry (WBDR) is an international project gathering important health information from people with bleeding disorders, such as haemophilia A, haemophilia B, and Von Willebrand Disease. This registry helps doctors and researchers around the world collect standard details about these conditions. By gathering anonymous data on things like the type and severity of your condition, your symptoms, and the treatments you receive, the WBDR aims to better understand how these disorders affect people globally. This information can then be used to guide how doctors provide care and to help develop new treatments for the future. Your participation, with your agreement, provides valuable insights to help a wide community.
At a glance
What is this study about?
Imagine a shared notebook where doctors from all over the world can record important details about their patients with bleeding disorders like haemophilia or Von Willebrand disease. That's essentially what the World Bleeding Disorders Registry (WBDR) is. It's an international effort to gather information from many different people so we can learn more about these conditions.
The main idea is for haemophilia treatment centres (HTCs) – which are special clinics for these conditions – to work together. They will collect similar information about their patients in a way that is organised and easy to compare. This helps everyone understand how these conditions affect people in different countries, what treatments are being used, and how well they are working. This project is just getting started, but the goal is to include at least 10,000 people from over 50 countries in the next five years.
Why is this so important? By bringing together so much information from real patients, researchers can spot patterns and answer big questions that might be hard to figure out with only a few patients. This will help fill in gaps in what we know about bleeding disorders and ultimately lead to better care and treatments for everyone living with these conditions, no matter where they are in the world.
Key takeaways
- It's an international project collecting anonymous health data on bleeding disorders.
- Aims to improve worldwide understanding and care for Haemophilia A, B, and Von Willebrand Disease.
- Your identity is protected; data shared is anonymous.
- No changes to your regular medical care or treatments are required.
- You can withdraw your consent at any time without affecting your doctors' care.
- Helps researchers answer important questions and potentially develop better treatments.
Who may be eligible?
To be part of this registry, you need to be a patient at a special clinic called a Hemophilia Treatment Centre (HTC) that is taking part in the registry. You must also have a diagnosis of Haemophilia A, Haemophilia B, or Von Willebrand Disease.
There are no other specific requirements or reasons why you couldn't join, as long as you meet the main criteria mentioned above. The registry welcomes people of all ages and genders.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Do I have Haemophilia A, Haemophilia B, or Von Willebrand Disease?
- Am I a patient at a Hemophilia Treatment Centre (HTC) that is participating in this registry?
- Am I comfortable with my anonymous health information being used for research globally?
- Do I understand that I can withdraw my consent at any time?
What does participation involve?
If you decide to take part in the World Bleeding Disorders Registry, your doctor and their team at your Hemophilia Treatment Centre will ask for your permission to share some information about your health. With your agreement, they will collect details about your bleeding disorder, such as its type and how severe it is, any symptoms you have, and the treatments you are receiving. This information will be made anonymous, meaning your name or other direct identifiers won't be linked to the data shared with the registry. This information will usually be taken from your regular clinic visit notes and added to the registry by staff at your treatment centre. There are no extra visits, specific assessments, or new medicines involved beyond your usual care. The registry aims to follow patients long-term, so your information might be updated over many years.
Potential risks and benefits
Locations (1)
- World Federation of HemophiliaVerified postcodeMontreal, Canada· Recruiting
Common questions
What is a 'registry'?
A registry is like a large, secure database that collects information about people with certain health conditions to help doctors and researchers learn more.
Will my name be used?
No, all your personal information is kept private. The data shared with the registry is anonymous, meaning your name won't be linked to your health details.
Do I have to take new medicines?
No, joining the registry does not involve taking any new or different medicines. Your treatment remains exactly as your doctor prescribes.
How does my information help?
By sharing anonymous details about your condition and treatment, you contribute to a bigger picture that helps researchers find patterns, improve care, and develop new treatments for bleeding disorders globally.
Can I change my mind later?
Yes, you are free to withdraw your consent and remove your information from the registry at any time, without it affecting your medical care.
How to find out more
Donna Coffin, M.Sc.
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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