Bleeding Disorders Top 10
- What is the role and cost effectiveness of blood clotting tests that give immediate results at the bedside (point of care) in managing medical, surgical or obstetric haemorrhage?
- How can we balance the risk and benefit of antithrombotic (blood thinning) treatment for cardiovascular disease (including heart attacks and strokes) in patients with bleeding disorders?
- What is the best haematological approach to management of severe haemorrhage after delivery?
- How should heavy periods be managed in women with bleeding disorders?
- What is the relationship between immune thrombocytopenic purpura (ITP) and fatigue?
- What are the most effective treatments for acute and chronic pain in people with haemophilia?
- What are the benefits of psychological and psychosocial strategies for support of individuals or families affected by bleeding disorders?
- What are the genetic and environmental factors that predispose people to immune thrombocytopenic purpura (ITP)?
- What is the best way to prevent or treat bleeds in people with bleeding disorders who have developed an inhibitor?
- In people with haemophilia, what is the best way to tell the difference between pain from acute bleeds, non-bleeding muscle/ligament injury and long term joint damage?
The remaining questions discussed at the workshop were (in no order of priority)
- Can a home testing device to record low platelets and clotting factors be developed?
- What is the role of exercise for both prevention and treatment of joint damage in haemophilia?
- What is the impact of the gut microbiome on immune thrombocytopenic purpura (ITP))?
- What activities are NOT safe to do with any given reduction in platelet count or clotting factor level?
- In people with haemophilia, what are the most effective treatments for the prevention and treatment of haemophilic synovitis (inflammation of the joint lining)?
- What causes the onset of immune thrombocytopenic purpura (ITP))?
- Is there an effective substitute for steroids in the treatment of immune thrombocytopenic purpura (ITP)?
- When is treatment for immune thrombocytopenic purpura (ITP) required?
- What causes exacerbations of immune thrombocytopenic purpura (ITP)?
- What is the psychological impact and burden of being a person or a carer of a person, with an acquired or nonacquired bleeding disorder?
- How can immediate (at the bedside/in the clinic) ultrasound help with management of haemophilia?
- For people with haemophilia, can giving factor via a needle into a vein be avoided; is there an alternative to intravenous administration of factors?
- Are there factors other than “the number of joint bleeds” that are associated with haemophilic arthropathy (joint damage)?
- Can haemorrhage after delivery, and its recurrence in subsequent pregnancies, be predicted and prevented?
- What overall (total) level of coagulation activity do you need to prevent bleeding and how can this be measured?
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For full details of all of the questions identified by this PSP, please see the document below.