Meeting notes, NHC meeting Hvidöre April 25th 2008
Nordic Haemophilia Council meeting, Hvidøre Castle, Copenhagen, April 25
Stefan Lethagen, Copenhagen
Marek Zak, Copenhagen
Jens Peter Gøtze, Copenhagen
Jørn Ingerslev, Århus
Erik Berntorp, Malmö
Lilian Tengborn, Malmö
Margareta Holmström, Stockholm
Fariba Baghei, Göteborg
Vladimir Radulovic, Göteborg
Elina Armstrong, Helsinki
Pål André Holme, Oslo
Páll T. Önundarson, Reykjavik
Memo from last meeting
There were no comments to the memo from the last meeting
Update from the centres
Most centres reported organisational changes.
Reykjavik: Organisational changes in the hospital management. Do not directly affect the haemophilia centre.
Oslo: Organisational changes in the Oslo region.
Copenhagen: the Centre for Haemostasis and Thrombosis has now left the Paediatric department and has formed the Haematologic Clinic 4 within the Haematolgical Department. For logistical reasons the name has been changed to Thrombosis and Haemostasis Unit. The Thrombosis Centre in Gentofte has been merged with the Thrombosis and Haemostasis Unit and will move physically to Rigshospitalet, when facilities are available.
Göteborg: There are plans to move the Coagulation Centre to the Haematological Department. There are three physicians at the Coagulation Centre: Fariba Baghei, Vladimir Radulovic and Anna Olsson. Furthermore, Lennart Stigendahl take part as an external part-time consultant. Rolf Ljung from Malmö is the paediatric consultant for the 8-9 haemophilia boys.
Malmö: Structural changes in Region Skåne. Plans of a fusing the Haematological department in Malmö with the Haematological Department in Lund. Will probably not involve the Coagulation Centre.
Helsinki: The Haemostasis Centre now have quite good facilities and is also staffed better, with 3-4 physicians. A patient registry for haemophilia patients is being created under the umbrella of a haematological registry.
Stockholm: New facilities close to the Haematological Department.
Århus: Benny Sørensen will take a position as Head of Haematological research at St Thomas Hospital in London, in August.
Formation of a more structured NHC organisation
It was decided to generate a more formalized organization with its own economy. Stefan Lethagen and a working group consisting Pall Önundarsson, Pål André Holme, Elina Armstrong and Jan Astermark alternatively Margareta Holmström will take on the planning.
Pall Önundarsson presented an early version of a NHC website.
Any proposals for the website may be e-mailed to Pall.
von Willebrand guidelines: Publication policy
The VWD guidelines will be published on the coming NHC website. Furthermore Stefan Lethagen will investigate the possibility of a publication in Haemophilia. Publications in the respective national physicians papers were also discussed.
Nordic Survey on Surgery in Haemophilia
Pål André Holme presented the progress of the study
Nordic Survey on Hepatitis
Jørgern Ingerslev presented the progress of the study. The aim is to include data from all Nordic Centres.
A Swedish translation and slight adaption of Tosetto and coworkers’ bleeding score will be tested in a study in Göteborg, Linköping and Malmö.
Management of haemophilia patients with coronary heart disease and atherosclerotic disease
Fariba Baghei will lead a working group planning expert guidelines for the management of haemophilia patients with coronary heart disease and atherosclerotic disease
Time and place for the next meeting will be dependent on the formation of the new NHC organisation.
Copenhagen, April 28, 2008