2013 NHC Annual report 2012-2013
NORDIC HEMOPHILIA COUNCIL GENERAL MEETING 2013
Oslo Holmenkollen November 21 2013
1. Appointment of chairman of the meeting.
2. The report from the past year by the Executive Committee.
3. The report from the working groups.
4. Presentation of the audited annual report from the past financial year.
5. Discussion of incoming proposals.
6. Appointment of the Executive Committee, cf. 6.
7. Appointment of working groups
8. Appointment of auditor.
9. Any other business.
Consensus meeting on diagnosis and treatment of hemophilia A and B; Nordic guidelines
Annual Report of the Nordic Hemophilia Council Executive Committee
The NHC. As of January 27th 2009 the NHC is an officially registered Danish association (CVR #31840422). The NHC has its registered office at the address of the Haemophilia Centre in Copenhagen: Enhed for Trombose og Hæmostase, Hæmatologisk Klinik IV, afsnit 4271, Rigshospitalet, Blegdamsvej 9, DK-2100 København Ø, Denmark. According to the NHC bylaws (see http://www.nordhemophilia.org closed website) the aims of the NHC are to:
• Improve knowledge on hemophilia and related disorders
• Further and support the cooperation between the Nordic hemophilia centres
• Further and support the theoretical and clinical education and research within hemophilia and related disorders
• Develop diagnostic and treatment guidelines
• Serve as an expert referral group for, and give advice to authorities, concerning matters within the area of hemophilia
and related disorders
• Foster international collaboration
Membership: All specialists at Nordic hemophilia centers are eligible for membership in the NHC through application to the council and approval by vote at a general meeting. Currently there are 19 members of the council, ie most specialists in the field in the Nordic area. Currently there is no annual fee since this was deferred at the last annual meeting.
Executive committee (EXC). Members of the executive committee can hold position for 3 consecutive 2-year terms. They are currently:
• Pall T. Onundarson elected chairman 2009-2011 and 2011-2013.
o Runs for re-election 2013-2015
• Pål Andre Holme elected as secretary 2009-2011 and 2011-2013.
o Runs for re-election 2013-2015
• Jan Astermark elected treasurer 2008-2010 and 2010-2012.
o Re-elected in 2012 for a final two year term 2012-2014
Financial issues: The predicted maximum cost of the NHC each year is the annual general meeting, two annual executive committee meetings (chairman, secretary and treasurer) and meetings of working groups founded at general meetings. Many meetings can be arranged as single-day trips thus saving hotel cost. The estimated running cost was initially based on the following calculations:
#Participiants #Meetings #Trips Price per trip * Cost
General meeting 20 1 20 500 10000
Executive group meetings 3 2 6 500 3000
Subcommittee meetings 5 4 20 500 10000
Total 28 7 46 25000
*Cost of annual general meetings (airline tickets, hotel 20 paying members = 20 trips)
In reality the cost has been considerabely lower since some NHC activities have been arranged during industry sponsored meetings.
The NHC has, however, been fortunate in obtaining very significant grants from major pharmaceutical companies to support our aims. We have asked for and received sponsorship grants of 5,000 Euros annually from each of the following companies. However, a biannual contribution would probably suffice based on experience.
• 2009: Octapharma, Biovitrum
• 2010: Baxter, Bayer
• 2011: SOBI, Octapharma, Novo Nordisk, CSL Behring
• 2012 Bayer
• 2013 (none and none requested)
Our current assets are about 174,000 DKR (23,500 EUR). It has been discussed to request funding from hospitals, governments or through Nordic co-operation grants but has not been elaborated further.
The EXC committee decides on each formal request for cost reimbursement of it´s members.
Working groups (WG)/guidelines
• WG on von Willebrand disease guidelines: This group completed it´s task at the last annual meeting in 2012. An abbreviated revised version of the Nordic von Willebrand Guidelines was published in Seminars on Thrombosis and Haemostasis 2011; 37: 495-502. and the full 2012 guideilines have been published on the NHC website (http://www.nordhemophilia.org). No revision has been planned for now and there is no current WG. The group has been dissolved for now but a revision should be made before 2017.
• WG on hemophilia diagnosis and treatment guidelines: Erik Berntorp is the chairman of this new group with members from each Nordic country, ie Riitta Lassila (Finland), Lone (Denmark), Pål Andrè (Norway), Páll (Iceland), Andreas Hillarp (Sweden). Also, Jan Astermark participates in the committee as the chair of the WG on principle of care and education.This group had it´s first meeting on May 2nd 2012 after and is close to completion of the guidelines that will be presented as a consensus meeting at the present meeting.
o The WG has discussed publishing the NHC guidelines on hemophilia as a supplement in Hemophilia at the cost of the NHC.
o Possibly the VWD guidelines should be published in the same supplement
• There is currently no WG on the acquired hemophilia guidelines which were renewed in 2009 and published on the website. A revision by Jan Astermark is underway as decided in 2011. This needs to be completed in 2014.
• At the 2010 general meeting it was decided to establish a ”WG on a common database for the Nordic Hemophilia Centers“ was founded and in 2011 it was decided that Margareta Holmström (Chair) and Elena Armstrong (co- Chair) together with Erik Berntorp and Andrea Landorph should lead this work in the future. The aim is to obtain annually updated vital statistics on bleeding disorders in the Nordic Area by surveying the centers or by online methods. Technical problems and ethical issues must be solved if the database will be online.
• A working group on the principle of care and education was established in 2010 with Jan Astermark as chair (and only member for now). This WG which works in close connection with the group for Nordic guidelines for treatment of haemophilia. The aim is to write a high standard Principal of Care document and Curriculum for the Nordic countries.
• At the 2011 general meeting it was decided to establish a WG on guidelines for diagnosis and treatment of platelet dysfunction with the task of evaluating and recommending diagnostic methodology, ie aggregometry, Multiplate, PFA-100 etc as well as treatment. At the 2013 annual meeting it was decided that Riitta Lassila chairs this WG which also consists of Andreas Hillarp, EvaZetterberg, Thomas Renne and Pål A. Holme.
• Website (http://www.nordhemophila.org, http://www.nordichaemophiliacouncil.org). The NHC runs a website which includes a closed site for members only (for meeting notes, bylaws etc). The open website is to emphasize:
1. Contact information of the Nordic hemophilia centers
2. Specific information on bleeding disorders and referral sites relevant to the Nordic countries, ie vital statistics etc.
3. NHC member list
4. Proceedings of the NHC, e.g. guidelines
5. Links to major educational sites. The NHC website is not designed to compete with those sites.
6. Possibly a list of important Nordic publications in the field
In order to get access to the closed site (username, password) members of the NHC should contact Sigridur Þyri Skuladottir (firstname.lastname@example.org). If members would like something to be published on the web they should contact the webmaster (PTÖ) or the EXC.
The EXC occasionally receives request for scientific co-operation or advise to the industry. All such requests have been turned down based on prior resolutions of our general meetings stating that: „the NHC should in general not give advice on specific issues from pharmaceutical companies unless a specific request has been discussed and passed at a general meeting”. In such cases the EXC has referred the industry to individua ...............