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Contact the study team using the details below to take part. If there are no contact details below please ask your doctor in the first instance.
von Willebrand Disease (any known subgroup)
This information is provided directly by researchers, and we recognise that it isn't always easy to understand. We are working with researchers to improve the accessibility of this information. In some summaries, you may come across links to external websites. These websites will have more information to help you better understand the study.
von Willebrand Disease (vWD) is an inherited blood clotting disorder that causes prolonged or spontaneous bleeding from birth. Affected individuals tend to bruise easily, may have frequent nosebleeds, bleeding from the gums, joints and sometimes stomach and intestinal bleeding (more common later in life). vWD also causes prolonged bleeding following injury, trauma, or surgery (including dental work). Women with vWD can have prolonged and heavy periods, they may also have an increased risk of excessive bleeding during pregnancy and childbirth. The severity and frequency of the bleeding episodes in vWD can vary greatly among affected individuals, even within the same family.
Treatment varies based on the diagnosis and rate and type of any bleeding experienced though is usually ‘on-demand’ (given after bleeding occurs) with some patients prophylaxis (treatment given to prevent bleeding from occurring) may be needed.
The lack of routine prophylaxis means that most patients are reliant on hospital-delivered care, which may involve frequent clinic appointments, causing prolonged bleeding due to a lack of timely administration of treatment. This can result in concurrent illnesses such as iron deficiency anaemia, which further impacts on the quality of life of affected individuals.
There remains a need for a comprehensive understanding of the experience of people with vWD in order to identify:
- The nature and range of symptoms that people experience and how these vary with the different disease subtypes.
- The variability in pathways through which people with vWD progress to access appropriate care.
- The impact of living with vWD on the individual’s quality of life.
Start dates may differ between countries and research sites. The research team are responsible for keeping the information up-to-date.
The recruitment start and end dates are as follows:
You can take part if:
You may not be able to take part if:
1. Have acquired vWD 2. Have other inherited bleeding disorders 3. Do not wish to participate in or to consent to the study. 4. Are under 16 years old (UK & Ireland) or 18 years old (US). 5. Those for whom written/spoken English would prohibit participation will also be excluded.
Below are the locations for where you can take part in the trial. Please note that not all sites may be open.
Mr
Simon
Fletcher
+44 7891038065
simon@haemnet.com
The study is sponsored by Haemnet and funded by Hemab.
Your feedback is important to us. It will help us improve the quality of the study information on this site. Please answer both questions.
Or CPMS 57207
You can print or share the study information with your GP/healthcare provider or contact the research team directly.
