A Study of Bleeding and Treatment in Participants With Von Willebrand Disease
This UK study is collecting important information about Von Willebrand Disease (VWD), a condition where blood doesn't clot properly. Researchers want to understand how different types of VWD (especially Type 1, and potentially Type 2 and 3) impact people's lives, including their bleeding episodes, the treatments they use, and their overall quality of life. The aim is to create a baseline understanding of VWD in the UK. This information will be vital for comparing results from future studies and ultimately helping to develop better treatments and support for those living with VWD. Taking part involves tracking your bleeding and treatments over several months.
At a glance
What is this study about?
This study is looking into Von Willebrand Disease (VWD), which is a common inherited bleeding disorder. People with VWD have a problem with a protein in their blood called von Willebrand factor, which helps blood to clot. This can lead to heavy bleeding that lasts longer than usual, for example, from cuts, nosebleeds, heavy periods, or after surgery.
The main goal of this study is to gather a comprehensive picture of what it's like to live with VWD in the UK. Researchers want to collect information on how often people experience bleeding episodes, what treatments they use to manage their bleeding, and how these experiences affect their daily lives and overall well-being. By understanding these factors, the study aims to create a clear snapshot of the current situation for people with VWD.
The information collected will be incredibly valuable. It will help doctors and researchers understand the typical experiences of VWD patients, serving as a benchmark for future research. This means that when new treatments or ways of managing VWD are developed, this study's findings can be used to see if they are making a real difference to people's lives.
Key takeaways
- It's about understanding real-life experiences with VWD in the UK.
- No new medicines are given; it's an observational study.
- Participation involves tracking bleeding and treatments over several months.
- Your insights will help improve future VWD care.
- You can stop participating at any time.
Who may be eligible?
To join this study, you need to be between 16 and 69 years old and have been diagnosed with Type 1 or Type 2A Von Willebrand Disease. Your diagnosis must be confirmed by specific blood test results, showing low levels of the von Willebrand factor and another clotting factor called FVIII.
It's important that you experience some bleeding symptoms related to your VWD. This could mean you've had bruising or bleeding that needed treatment at least three times a year, or you regularly experience heavy menstrual bleeding.
There are also some reasons why you might not be able to join. For example, if you have a history of serious allergic reactions to certain medications, a personal history of blood clots (unless it was a mild, catheter-related clot), or if you have other serious bleeding disorders or conditions that significantly increase your risk of blood clots. If you're planning major surgery during the study period or are already on continuous medication to prevent bleeding, you also wouldn't be able to participate.
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.
- Are you between 16 and 69 years old?
- Do you have a confirmed diagnosis of Type 1 or Type 2A VWD?
- Do you experience bleeding symptoms from your VWD (e.g., at least 3 bleeding episodes per year or regular heavy periods)?
- Do you have a Body Mass Index (BMI) below 38.5?
- Do you NOT have a history of blood clots or other serious bleeding disorders?
- Are you NOT planning major surgery during the next year?
What does participation involve?
If you decide to take part, you'll first have a screening visit to check if you're suitable for the study. Then, there will be a baseline evaluation where more information about your VWD will be collected. You'll then enter an observation period lasting about 4 months.
During this 4-month period, you'll have check-ins every two weeks, likely done remotely (like a phone or video call). In these check-ins, you'll discuss entries you've made in a bleed diary, where you'll record any bleeding episodes and what treatments you used. After the initial 4 months, you'll have the option to continue in the study for a longer observation period, up to a total of 12 months.
Potential risks and benefits
Locations (17)
- Phoenix Children's HospitalVerified postcodePhoenix, United States· Recruiting
- Arkansas Children's HospitalVerified postcodeLittle Rock, United States· Recruiting
- Children's Hospital of Los AngelesVerified postcodeLos Angeles, United States· Recruiting
- University of Miami Hospital and Clinics, Sylvester Comprehensive Cancer CenterVerified postcodeMiami, United States· Recruiting
- Emory Children's CenterVerified postcodeAtlanta, United States· Recruiting
- Innovative Hematology, Inc./Indiana Hemophilia and Thrombosis CenterVerified postcodeIndianapolis, United States· Recruiting
- Tulane University School of MedicineVerified postcodeNew Orleans, United States· Recruiting
- University of Michigan Hospitals, Department of Hemophilia and Coagulation DisordersVerified postcodeAnn Arbor, United States· Recruiting
- Mayo Clinic - RochesterVerified postcodeRochester, United States· Recruiting
- Oregon Health & Science UniversityVerified postcodePortland, United States· Recruiting
- Hemophilia Center of Western PennsylvaniaVerified postcodePittsburgh, United States· Recruiting
- The University of Texas Southwestern Medical CenterVerified postcodeDallas, United States· Recruiting
Common questions
What is Von Willebrand Disease (VWD)?
VWD is a common inherited bleeding disorder where your blood doesn't clot as it should, leading to longer or heavier bleeding.
What is the study trying to find out?
The study wants to understand people's real-life experiences with VWD, including bleeding episodes, treatments, and how it affects their daily lives.
Do I have to take new medicine in this study?
No, this study is about observing your current bleeding and treatment experiences; you will not be given new medicines to test.
How long will I be in the study?
The main part of the study is about 4 months, with an option to continue for up to a total of 12 months.
Can I leave the study at any time?
Yes, you are free to withdraw from the study at any point, and it won't affect your medical care.
How to find out more
Clinical Trials (USA; UK)
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
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