Minutes from the NHC meeting in Oslo June 4th 2009
Minutes from the Nordic Haemophilia Council meeting,
Thon Hotel Bristol, Oslo, June 4th 2009
Participants: Stefan Lethagen, Páll Torfi Önundarson, Jan Astermark, Pål Andrè Holme, Anna Olsson, Fariba Baghaei, Andreas Hillarp, Lennart Stigendal, Anne Mäkipernae, Lotta Joutsi-Korhonen, Jari Leinonen, Lone Hvidtfeldt Poulsen and Margareta Holmstrøm.
A. Election of new chairman. Stefan Lethagen stepped down as chairman since he has taken a new position at NovoNordisk. Páll Torfi Önundarson (former secretary) was elected as new chairman
Pål Andre Holme was elected as new secretary
It was decided that NHC should at least have annual meetings. In addition NHC will be organized into smaller working groups on different subjects.
Executive committee (chairman, secretary and treasurer) will meet twice a year.
• Páll informed about the financial needs of the NHC. The executive committee had estimated the annual cost of running the NHC at about 25,000 Euros. The participants found this budget reasonable.
• The annual fee of each member is 10 Euro. Each member must email Jan Astermark (treasurer) his/her invoice address and Jan will send out an invoice.
• Potential corporate sponsors (six relevant drug companies) will be asked to contribute with 5000 Euros as an unconditional grant annually. Corporate sponsors will get logos on banners on the website
2 Study update
A. The Hemophilia Surgery study. Pål Andre gave an update and informed that 16 patients have been included in Norway. Sweden and Finland have included 2 patients. Island and Denmark? are waiting for approval.
B. Jan gave an update on the current state of the HIGS study.
3. Nordic guidelines:
• Nordic guidelines on VWD: Andreas Hillarp was elected as knew chairman. He will together with the old members of the group rewrite the guideline before the next NHC general meeting
• Nordic guidelines on Acquired hemophilia have been updated and new will be placed on the website shortly when receveid from L. Tengborn.
• Nordic guidelines for treatment of haemophilia. The participants decided that NHC should wait for the new Swedish guidelines before starting up this work. The executive committee will initiate the working group. The question was raised whether national guidelines are needed if the NHC can deliver guidelines?
4. Website development:
• Páll informed about the Website and the meeting decided that we should have an open site and closed site for the NHC members.
• The open site content will emphasize:
o Specific information regarding bleeding disorders relevant to the Nordic countries.
o Links to other centers. etc
o Information where specific laboratory test can be sent to and analyzed within the Nordic countries.
o NHC member list
o Possibly a list of relevant and recent Nordic publications
o The idea is not to be a major educational site, will place links to the wfh.org and nhf.org
5. Each present center gave an update on current main research projects
6. Next meeting: To be determined. The next NordCoag meeting is in Helsinki in August 2010, ie in 15 months and this may be to distant.
7. The newly elected executive committee met the potential corporate sponsors after the general meeting and informed about NHC and sponsorship. The chairman will write a formal letter to the companies but the hope is that we will have undconditional funding shortly.
8. A common database/FileMaker was briefly discussed.
Pål Andrè Holme