Board Meetings

Minutes from the General Meeting 25 November 2016 in Göteborg

06.09.2017

Nordic Hemophilia Council Meeting

25 Nov 2016, at 12.54-14.30

Clarion Hotel Post, Meeting room ‘Post 5’

Göteborg, Sweden

 

Participants:

Fariba Baghaei (Gothenburg), president

Elina Armstrong (Helsinki), secretary

Lone Hvitfeldt Poulsen (Århus), treasurer not present

 

Michael Damgaard (Gothenburg)

Margareta Holmström (Stockholm)

Ole H. Larsen (Aarhus)

Riitta Lassila (Helsinki)

Pia Petrini (Stockholm)

Karin Strandberg, Malmö

Maria Tornemo (Gothenburg)

Eva Zetterberg (Malmö)

Pal Önundarson(Reykjavik)

 

 

Meeting minutes:

 

1. Fariba was elected as the chairman and Elina as the secretary for this meeting.

2. Treasurer Lone was not able to participate. Financial update will be provided by email.

3. Meeting minutes from the last meeting 18 June 2016 in Oslo were reviewed and accepted.

- regarding financial support; Fariba has sent letters to seven pharmaceutical companies and some positive replies have been received, but contracts are needed.

 - unrestricted grants are not possible, but specified activities like the Guidelines project are possible to be funded

- SOBI’s contract draft was reviewed and could perhaps be used as a template

- CSL Behring and Octapharma have indicated similar policy

- Shire is discussing internally and will get back to us

- discussion was for preferably independent or equal ways of financing

 

4. Discussion about publication of the Nordic Hemophilia Guidelines and the costs involved:

                      - as a supplement in Haemophilia Jounal the cost would be 20 000-30 000 €

                      - this support could be applied from pharmaceutical companies

- an update of the current guidelines was discussed to be able to apply for funding

- SOBI’s contract draft was discussed and suggestions for relevant editions were made. A draft will be circulated for all participants to review and comment

- it was also discussed that the current Guideline document update should be concised and published similar way as the VWD Guideline with significantly reduced cost or for free

5. EHL-guidelines and a concised version for the update of the Nordic Hemophilia Guideline

- new group for the task was formed with representation from each centre (preferably clinical + lab):

Margareta and Susanna, Karin and Eva Z, Fariba, Lone or Eva F, Elina, Pal, Pål Andre

- Margareta will organize the first meeting for this group during EAHAD in Paris; suggested date and time is Wed 1 Feb, 2017 at 15:00

 

6. Report from Working Groups; meetings held in small groups with presentations at the general meeting

                     FVII Working Group (Eva Z, Ole):

- Guidelines are completed and will be circulated by email among the council members

- summary could be published after professional lay-out editing; the cost of appr. 2000 euros could be applied from the companies as a specific project

Registry Working Group

- report from the Swedish Registry progress was presented by Margareta during  the NHD meeting

                     - aiming towards a common Nordic data collection system /registry

                     - home treatment and bleeding log included

 

Report from the Platelet Working Group (Riitta, Eva);

                      - survey of the current standards will be created – questionnaire to each centre

                      - Riitta will send to all for review and comments

                      - aim to create an algorithm according to Nordic routines and

                        adopt to ISTH SSC;

         - routine analytics, specific analysis, (thrombogenetics, plt

           panel), value for practical knowledge

         - immunology; ITP, IPF, bleeding score

- platelet symposium with pre-meetings locally; for example Malmö in 13th   Dec 2016 

                     Guidelines Working Group:

- The Acquired Hemophilia Guideline (2012) to be updated; Fariba and Jan Astermark; work is in progress- will be circulated by email

- manuscript from Riitta and Elina for a book chapter recently      submitted can be used as supporting material

                     - the Nordic VWD Guideline (2011) to be updated; Riitta

                              - plans for a light revision and circulation by email

                    - the Nordic Hemophilia Guidelines  (see above)              

7. Continuous discussion about collaboration with Baltic countries (Riitta)

- Riitta reviewed the ongoing WFH Twinning project between Helsinki and Tallinn including EAHAD multidisciplinary working groups of rehab medicine and physiotherapy

- can we include Baltic participants as associated members of the Nordic Hemophilia Group? It was discussed and decided that by-laws would have to be changed; Riitta and Pal will look into technical details. Plan is to announce the formal invitation during the next general NHC meeting in Helsinki 

8. Status and future of the NHC web site (Pal)

               - suggestions for the website from members is encouraged

               - for example the NHC meeting minutes will be sent to Pal to be put on the site

9. Any other issues

Eva Z: Suggestion of a descriptive study on acquired hemophilia in the Nordics (slides):

                              - aim to collect data on current practices of diagnoses and treatment

                              - inclusion criteria; pt diagnosed 2006-2016

        - informed consent and ethical application processes were discussed

        - methods; demographic and clinical data at diagnosis, management

          of bleeding, response to treatment, immunosuppression, adverse

          events, follow-up

         - room for improvement, funding 

10.Next meeting

               In association with the NCM 2017 in Helsinki 31 Aug – 2 Sep 2017

 

 

 

 


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