Executive group meeting at Kastrup June 15th 2011
from the executive NHC board meeting Copenhagen
June 15th 2011
Participants: Páll Torfi Önundarson, Jan Astermark, Pål Andrè Holme
Today: NHC has a total of 156182,60 DKR. – approx: 30000,00 Euro
a. Corporate sponsors – Who has paid?
• 2009: Octapharma, Biovitrum,
• 2010: Baxter, Bayer,
• 2011: Octapharma, Behring.
• SOBI, NovoNordic Baxter, Behring will be asked to sponsor 2011
b. Member list
18 members have paid the annual NHC fee of 10 Euro for 2010.
No one has paid for 2011.
Suggestion: Pay for 3 years next time. Jan will send out invoices within the next two weeks. This aspect will also be brought up on the next annual meeting.
The open site has information about:
• Specific information regarding bleeding disorders relevant to the Nordic countries
o No information/comments sent by members
• NHC member list from 2010 will be published
• All paying members have a username and a password for the closed site
von Willebrand working group:
o Andreas chair
o Pål Andre
o Andrea Landorph
o Pia Petrini
• Abbreviated 2011 revised version of the Nordic von Willebrand Guidelines.
o in press in Seminars in Thrombosis and Haemostasis 2011
o When published a link will be published on the website
• Full revision unfinished
o to be published on the website after the journal publication
o Andreas has sent out, awaiting comments
Cases on the next annual meeting (Jan: VWD type IIb patient + other presenters
Nordic guidelines for treatment of haemophilia
• Erik was elected as the chairman of this new group
with a member from each country
• Riitta (Finland),
• Lone (Denmark),
• Pål Andrè (Norway )
• Páll (Iceland).
• Jan Astermark as the chair of the WG on principle of care and education
Swedish guidelines are now almost in place (2011 spring).
Group has been formally initiated but has not met yet; Erik Berntorp will bring the group together.
Guidelines on acquired hemophilia
Updated by Lilian Tengborn in 2009.-No current working group
A new Group on acquired antibodies? Will be brought up on next annual meeting.
Suggestion: ( Jan, Riitta and Pål Andre), to be initiated
Working group for principle of care and education
The group will be chaired by Jan Astermark and will work in close connection with the group for Nordic guidelines for treatment of haemophilia.
Jan will write a draft and present this on the next annual meeting.
Working group for annual report form each centre -previous discussed as common database in the Nordic centres.
The NHC wants to have a common database in the Nordic centres and different solutions are discussed.
The aim is to get vital statistics from the Nordic Haemophilia Centres.
Margareta Holmström was decided to chair this work on last meeting in the future with a member from each haemophilia treatment centre.
This group has not been initiated
Discussion in Copenhagen: Start with an annual survey where all centres report and hopefully expand from that. Jan`s PhD student Løvdahl that might be the person to run it.
Working group on platelet dysfunction.
Methodology: Aggregometry, Multiplate etc
Proposed member in Copenhagen: Riitta , Andreas
Nordic Consensus meetings
The NHC aim is to have Nordic Consensus meetings within the objectives of NHC as a part of NHC activities in the future.
Such meeting will then be held without any direct support or attendance from pharmaceutical companies. However, this will require increased annual support from the companies.
Possibly such consensus meetings can be arranged in association with the annual NHC general meetings.
Liver transplantation in haemophilia in the Nordic countries:
As agreed at the Haemophilia Days, Oslo, 2008 a Nordic collaboration will take place. There is a Nordic registry on liver transplants and hopefully each Haemophilia treatment centre will participate. The process is chaired by PhD student Hoa Tran (Oslo). Ongoing
All centers should have ID –cards for their patients. Stating: Diagnoses, treatment and contact persons
Executive committee issues:
Jan was re-elected as treasurer in 2010 for a 2nd term of two years (2010-2012).
This year elections: Chairman and secretary for term of 2011-2013.
Riitta was re-elected as auditor on last annual meeting.
Suggestion: Chairman and secretary will run for re-election. New candidates should be announced by mail to the chairman prior to meeting and if more than one candidate is proposed for same position, a closed election should be performed.
New haemophilia doctors at the centers:
Malmø: Karin Knobe
Pål Andrè Holme