Minutes of FWG Business Meeting

Minutes FWG AEPC 2015

Minutes of FWG business meeting for the Fetal Cardiology Working Group Business Meeting Prague 2015

Thursday 22nd May 08.00-09.00 Meeting Room 3

45 members of the FWG (including all members of council except Joaquim Bartrons), were present. Olli Pitkänen and Joaquim Bartrons sent their apologies.

1) The minutes from the last meeting in Helsinki 2014 were agreed as accurate and accepted with no matters arising from them.

2) Composition of council.

The composition of the FWG council in 2014 : Chairman: Ulrike Herberg (2014 - 2017) Secretary: Sally-Ann Clur (2012 - 2015)

Treasurer: John Simpson (2013 - 2016)

Councillor: Joaquim Bartrons (2012 - 2015)

JM rep Pawel Wlasienko (2013 - 2015)

The secretary and councillor needed to be replaced. Olli Pitkänen was the only nominee for these two positions. As Sally-Ann Clur only served two of the possible three years as an ordinary councillor it was suggestion that she continue as an ordinary councillor and that Olli Pitkänen from Helsinki take over as the secretary. Both of these proposals were accepted.

There was one candidate for the position of JM rep; Joana de Oliveira Miranda from Porto, Portugal but as of now no voting has been performed as there is some uncertainty regarding the length of tenure as JM Rep (2 or 3 years). This issue still needs to be decided.

Joaquim Bartrons was thanked for his work as councillor (2012 - 2015) .

3) The report from the treasurer John Simpson reported that there are 1241,15 Euros In the FWG account. The major expense in 2014 was the FWG aortic stenosis study.

4) Multi-centre working-guidelines John Simpson presented a draft version of guidelines for multi-center studies that he has drawn up. The draft guidelines are attached to these minutes and once approved will be posted on the FWG website. Essentially these studies should be welcomed. Authorship etc Minutes FWG AEPC 2015

should be defined from the outset. Should be an identified steering group (minimal 2 centres). Ethics approval as per national guidelines.

G Sharland: There is a possibility to get financial support from the AEPC for AEPC run multicentre studies . A plan needs to be submitted before starting. There is also the option to apply for a grant for financial reward per publication within a planned time frame.

J Carvalho: The difference between an AEPC-run study and a study where an individual center is asked to participate in a study was discussed.

5) The Fetal Cardiology Junior Teaching course This will now be held on February 18-20th, 2016 in Warsaw Poland. The course will be run by Johanna Dangel.

6) Aortic stenosis Study. An update of the retrospective arm of this study was presented by Helena Gardiner. This has resulted in 1 publication already. The study has won the prize for the highest scoring abstract prize at AHA and was re-submitted to Circulation in May. An overview of the prospective part was given by Mat Mellander. There is a web-based database available. The role of a core lab was stressed. There was a proposal for blinded assessors with randomization and ideally performance of the intervention at one center. Fetuses with significant chromosomal aberrations will be excluded. If parents decline randomization then the data can still sent to the registry. There was much discussion about the practicalities of randomization

Problems with single center performing procedures were also discussed and many centres stated that their participation would not be possible if this was an absolute criterion for the study. It was decided that the steering committee needs to go back to the drawing board and rethink the protocol and then come back to the FWG. Regarding authorship the words “significant contribution” need to be clearly defined.

7) Japanese exchange program Pawel Wlasienko reported back on his recent participation in the very successful exchange programme.

8) IFCIR-International Fetal Cardiac Intervention Registry : co-operation Ulrike Herberg gave a report back. One Paper has been accepted in JACC. Minutes FWG AEPC 2015

9) RCT Trial on fetal antiarrhythmic drugs Ulrike Herberg presented the new protocol for the FAST-Trial. There was some concern expressed regarding the change in protocol and the drugs chosen.

10) Multicenter trial: fetal diagnosis of LQTS (Bettina Cuneo/ Peter Swartz): Those wishing to contribute to this study (serial measurements of fetal heart rate in pregnancies of LQTS mutation positive mothers (types 1-3) or where their father is a mutation positive can go to the website fetallqts.com

11) Grants: AEPC is proud to announce a new SCIENTIFIC GRANT for the best publication that has been the result of an international co-operation of AEPC members. The aim of the funding is to support multicentre scientific projects in the field of paediatric and congenital cardiology in Europe. Important considerations for deciding on the winning publication will be: the impact of the journal, the number of internationally involved AEPC members and the number of European centres/countries involved in study, as well as the scientific value. A copy of the manuscript together with the statement of acceptance from the journal must be sent to the scientific secretary . Council will decide on the best publication and the result will be announced during the annual conference. The prize will be 5000 Euros and this amount will be transferred to the relevant WG account to support further WG scientific activities.

12) There were no other matters arising and the meeting was closed.