RecruitingNAINTERVENTIONAL

Algorithm-based Management to Reduce the Recurrence of GI Bleeding and Severe Epistaxis in Von Willebrand Disease

The WILL MANAGE study aims to find better ways to prevent reoccurring bleeding in people who have Von Willebrand Disease (VWD). VWD is a genetic condition that affects how your blood clots, leading to more bleeding than usual. This study focuses on reducing serious stomach bleeding or severe nosebleeds through two different ways of managing the condition: a new, specially designed management plan and the care usually given. Researchers want to see if the new approach can lower the number of times these serious bleeds happen again. It's a randomised study, meaning participants will be assigned to one of the two groups by chance.

At a glance

Status

Recruiting

Phase

Sponsor

University Hospital, Lille

Enrolment target

Start

10 Mar 2026

Estimated completion

01 Mar 2032

Von Willebrand Disease (VWD)

What is this study about?

Von Willebrand Disease (VWD) is a common inherited bleeding disorder, meaning it's passed down through families. People with VWD don't have enough of a protein called von Willebrand factor, or it doesn't work properly. This protein plays a key role in helping your blood clot, so if it's faulty, you might experience more bleeding than usual. This could include things like heavy periods, easy bruising, or prolonged bleeding from cuts.

Sometimes, VWD can lead to more serious bleeding, such as bleeding in the stomach or gut (gastrointestinal bleeding) or very severe nosebleeds. These can be difficult to manage and can significantly impact a person's life. Doctors are always looking for ways to better prevent these serious bleeding episodes from happening again.

This study, called WILL MANAGE, is designed to compare two different ways of managing VWD in people who have had these serious bleeding problems. One approach is the 'standard of care,' which is the usual treatment doctors currently give. The other is a new, structured management plan developed by doctors and specialists. The goal is to see if this new approach can help reduce how often these serious stomach bleeds or nosebleeds happen again, ultimately improving the health and quality of life for people with VWD.

Key takeaways

This study aims to make serious bleeding less common in VWD.
It compares a new management plan to current standard care.
Focus is on stomach/gut bleeding and severe nosebleeds.
Participation involves being randomly assigned to one of two care groups.
You must have an inherited form of VWD and be aged 18+.
You can stop participating at any time if you wish.

Who may be eligible?

To join this study, you need to be an adult aged 18 or over. You must have been diagnosed with Von Willebrand Disease that you were born with, not a form that developed later in life. A key part of joining is having experienced certain types of bleeding: either bleeding in your stomach or gut (which could be obvious, like vomiting blood, or less obvious, causing anaemia), or very severe nosebleeds that required blood transfusions or special treatments.

You also need to be part of a social security scheme, like the NHS, and be able to give your full permission to take part by signing a consent form.

However, there are reasons you might not be able to join. These include if your VWD developed later in life, if you have certain reactions to VWF treatments, some medical conditions like severe liver disease or cancer treatment, if you are pregnant or breastfeeding, or if you are unable to understand and give consent.

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 18 years old or older?
Do you have Von Willebrand Disease that you were born with?
Have you had serious stomach/gut bleeding or very severe nosebleeds?
Are you able to give your informed consent to join the study?

Answer every question to see your result.

What does participation involve?

The study involves following one of two management plans for your Von Willebrand Disease. You'll be randomly assigned to either the new, special management plan or the standard care plan. This means you won't get to choose which plan you are on, and neither will your doctor in the study. You will have regular contact with the study team, who will monitor your health and any bleeding episodes you experience. This could involve clinic visits and assessments to track your progress. The total duration of your participation in the study will be explained by the study team, including how long you will be on your assigned management plan and any follow-up checks. Full details will be provided before you agree to take part.

Potential risks and benefits

Taking part in a study like this always has potential benefits and risks. A potential benefit is that you might receive careful, expert management of your VWD, and if the new management plan is more effective, you could experience fewer serious bleeding episodes. However, there's also the chance that the new approach might not work better than standard care. As with any medical care, there could be side effects or inconveniences from treatments or assessments, but the study team will monitor you closely. It's very important to remember that you have the right to withdraw from the study at any time, for any reason, without it affecting your usual medical care.

Locations (17)

CHU Lille
Verified postcode
Lille, France· Not yet recruiting
CHU Tours
Verified postcode
Tours, France· Not yet recruiting
CHU Amiens
Verified postcode
Amiens, France· Not yet recruiting
CHRU Brest
Verified postcode
Brest, France· Not yet recruiting
Hôpital cardiologique Louis Pradel
Verified postcode
Bron, France· Not yet recruiting
CHU Caen
Verified postcode
Caen, France· Not yet recruiting
CH Chambery
Verified postcode
Chambéry, France· Not yet recruiting
CHU Clermont-Ferrand
Verified postcode
Clermont-Ferrand, France· Not yet recruiting
CHU Dijon
Verified postcode
Dijon, France· Not yet recruiting
AP-HP Hôpital Kremlin Bicetre
Verified postcode
Le Kremlin-Bicêtre, France· Not yet recruiting
AP-HM Hôpital Timone
Verified postcode
Marseille, France· Not yet recruiting
CHU Montpellier
Verified postcode
Montpellier, France· Recruiting

Common questions

What is Von Willebrand Disease?

It's a common inherited blood disorder where your blood doesn't clot as well as it should, leading to more bleeding.

What kind of bleeding is this study interested in?

It focuses on serious bleeding in the stomach or gut, or very severe nosebleeds that have happened again.

Will I get to choose my treatment in the study?

No, you'll be randomly assigned to either the new management plan or the standard care plan, like drawing lots.

How long will I be in the study?

The study team will tell you the exact duration, including treatments and follow-up, before you make a decision.

Can I leave the study if I change my mind?

Yes, you can leave the study at any time, and it won't affect the medical care you usually receive.

How to find out more

Marie Caillierez

drc@chru-lille.fr 0033320444145 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.