So we had a separate session, which was specifically looking at controversies and bleeding disorders. And what we tried to pick in that session was things that hematologists see frequently in relation to bleeding disorders. And the things that we talked about there were management of unclassifiable bleeding disorders, which is something that’s changed a lot over recent years. That presentation was given by Dr Will Thomas from Cambridge...
So we had a separate session, which was specifically looking at controversies and bleeding disorders. And what we tried to pick in that session was things that hematologists see frequently in relation to bleeding disorders. And the things that we talked about there were management of unclassifiable bleeding disorders, which is something that’s changed a lot over recent years. That presentation was given by Dr Will Thomas from Cambridge. And he really talked about the algorithm of investigations we would do in these patients. And then the fact that the genetic testing that’s on offer, doesn’t detect a very high rate of abnormalities in patients whose initial investigations are negative. So we talked about whether that’s a helpful thing to do or not. And I guess the message to me was that, although we have lots of testing available, we have to be honest with patients about the chance of those tests yielding any further information.
And we then went on within that part of the session to talk about management of these patients. And I think that’s a very pragmatic approach really with desmopressin and tranexamic acid, occasionally with platelet cover, if needed dependent on the patient’s history. So I think that was a useful overview. And I think the recognition of that group of patients as a separate group of bleeding disorders is something that’s really sort of increasing over the years. And we see that reflected in national hemophilia database registrations. The second talk in that session was from Dr Carolyn Miller from Imperial Hammersmith. And she talked about Von Willebrand disease controversies and this was really good. There was a lot of discussion around it. And the main controversy she talked about was patients who we would previously in the UK have classified as having low VW levels as a risk factor for bleeding.
And the fact that new international guidance would perhaps categorize them as type 1 Von Willebrand disease. And we went through the pros and cons of doing that. The pros are potentially not missing a diagnosis and ensuring that patients in healthcare systems that are insurance driven have access to healthcare. But the cons are potentially over calling a mild abnormality and also missing another bleed tendency. So one of my take home points from her talk was that if the bleeding is disproportionate for mild reductions and Von Willebrand levels, you don’t stop investigating, and you look for other causes. So I think they are the things that we talked about at the meeting in terms of common problems in how we manage bleeding disorders at the moment.
