Board Meetings

NHC General meeting Stockholm August 2012, Annual Report 2011-2012

28.08.2012

NORDIC HEMOPHILIA COUNCIL GENERAL MEETING 2012
STOCKHOLM August 30 2012

ANNUAL REPORT OF THE EXECUTIVE COMMITTEE
AGENDA:

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.

Coffee

Consensus meeting on VWD

Annual Report of the Nordic Hemophilia Council Executive Committee
2011-2012


The NHC. As of January 27th 2009 the NHC is officially registered as a 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 haemophilia and related disorders
• Further and support the cooperation between the Nordic haemophilia centres
• Further and support the theoretical and clinical education and research within haemophilia 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 haemophilia 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 18 members of the council, ie most specialists in the field in the area.

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
• Pål Andre Holme elected as secretary 2009-2011 and 2011-2013
• Jan Astermark elected treasurer 2008-2010 and 2010-2012

Financial issues:
The predicted maximum cost of the NHC each year is the annual general meeting, two annual executive committee meeting (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 cost based on the following calculations:

(CALCULALTION MISSING (var ekki hægt að setja inn á gamla vefinn))
*Cost of annual general meetings (airline tickets, hotel 20 paying members = 20 trips)

Thus, the estimated annual cost is up to 25,000 euros although it may actually be lower since some NHC activities can be arranged during industry sponsored meetings such as Baxter Hemophilia Days. The NHC has succeeded in obtaining significant grants from five major pharmaceutical companies to support our aims and our assets currently are about 250.000 DKR. We have received sponsorship grants of 5,000 Euros each from the following companies, ie 10,000 Euros annually. Our total assets are currently about 33,000 euros (250.000 DKR).
• 2009: Octapharma, Biovitrum
• 2010: Baxter, Bayer
• 2011: SOBI, Octapharma, Novo Nordisk, CSL Behring
• 2012 Bayer (pending)
The EXC committee decides ad hoc on each request for cost reimbursement of it´s members. It has been discussed to request funding from hospitals, governments or through Nordic co-operation grants but no decision has been made.

Working groups (WG)/guidelines
• WG on von Willebrand disease guidelines: Andreas Hillarp has lead this group with Pål Andre Holme, Pia Petrini, Riitta Lassila, Andrea Landorph and Pall T. Onundarson. An abbreviated revised version of the Nordic von Willebrand Guidelines was published in Seminars on Thrombosis and Haemostasis 2011; 37: 495-502. The WG had a final meeting on July 17th 2012. The full 2012 revision will be presented by Andreas at the current meeting for approval. Also, a consensus meeting will take place relating to treatment during specific circumstances. Once approved, the new guideilines will be published on the website.

• WG on hemophilia diagnosis and treatment guidelines: This group had it´s first meeting on May 2nd 2012 after Swedish guidelines were published as had been decided at the last annual meeting. Erik Berntorp is the chairman of this new group with a member from each Nordic country, ie Riitta Lassila (Finland), Lone (Denmark), Pål Andrè (Norway), Páll (Iceland). Also, Jan Astermark participates in the committee as the chair of the WG on principle of care and education. Erik will report on the work at the annual meeting.

• There is currently no WG on the acquired hemophilia guidelines which were renewed in 2009. They are currently undergoing the revision of Jan Astermark as decided in 2011.

• 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. However, until such problems are solved, simple surveying should be begun for annual vital statistics and factor usage which can be annually requested from each center.

• 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 will work 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. It was understood that Riitta Lassila should chair this WG. The 2012 general meeting must assign this task to additional 2-3 interested members.

• Website (http://www.nordhemophila.org, http://www.nordichaemophiliacouncil.org). The NHC continues to run 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, eg 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 (siggask@landspitali.is). If members would like something to be published on the web they should contact the webmaster (PTÖ) or the EXC.

Other tasks:
The EXC occasionally receives request for scientific cooperation or advise to the industry. All such requests have been turned down based on the 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 individual haemophilia centers.


GENERAL MEETING AGENDA August 30 2012 STOCKHOLM

1. Appointment of chairman of the meeting.

2. The report from the past year by the Executive Committee.
- Pall reviews

3. The report from the working groups.
- VWD (Andreas)
- Hemophilia (Erik)
- a WG on a „common database for the Nordic Hemophilia Centers“
o Margareta or Elena
- (Principle of care and education. Jan)

4. Presentation of the audited annual report from the past financial year.
- Jan
- Sponsorship in 2012: SOBI, NovoNordic, Baxter, Bayer will be asked to sponsor 2012

5. Discussion of incoming proposals.
- EXC Proposals for year 2011:
o Drop annual fee.
o Common database; annual upgrade

6. Appointment of the Executive Committee, cf. 6.
- EXC proposal: re-elect Jan as treasurer for a last term 2012-2014

7. Appointment of working groups
- EXC proposal:
o Hemophilia WG: same
o vWD: same (dissolve? Or «hibernate»...)
o Platelet WG: Riitta, Andreas, Fariba?

8. Appointment of auditor. Riitta

9. Any other business.
- Suggest: Next general meeting to be decided by the EXC

Website

Nordic Consensus meetings

The NHC aim is to have Nordic Consensus meetings in the future within the objectives of NHC as a part of NHC activities in the future. Such meeting will 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


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