Dear Members,
The most prominent news is that the ESC board has now formally approved the name change of our Working Group from “Grown-up Congenital Heart Disease” (GUCH) into “Adult Congenital Heart Disease” (ACHD). Indeed at the beginning of our field in the nineties GUCH was an appropriate name, but now, with growing numbers of adults and even elderly patients the name change was necessary and appropriate.
It is a great pleasure to inform you about the “Study group on ACHD in the Central/South/Eastern (CSE) European countries”. The study-group includes physicians from 15 CSE European countries with a common goal to better understand ACHD situation, needs, issues, and also opportunities in each country and the region, as well as to improve access to high quality ACHD care to all patients throughout Europe. This Study group had a meeting in June 2019 in Bratislava, Slovakia lead by Prof Iveta Simkova and Dr Margarita Brida with support of Prof Gerhard Diller. The representatives established firm basis for future collaboration, both between 15 European countries and with our ESC Working Group of ACHD. Next steps are already planned and will be made. We will keep you updated.
In Paris we had a very successful ESC congress with excellent sessions on for instance the diagnostics and treatment of abnormal coronary arteries and ASD closure at older age. Also, the social event of the Working Group was a great success.
We are now looking forward to the EuroGUCH 2020 congress to be held in Leuven, Belgium on April 17 and 18 (local host Prof Werner Budts), with a pre-educational meeting focusing on imaging on April 16. It will be one of the most important meetings on ACHD worldwide and we hope to welcome over 400 people from many different countries. Registration will open soon. For more information we refer to the conference website.
Prof Gary Webb asks attention for a software system that has been in use in Canada and elsewhere for over 20 years and is called CAPS. It is undergoing an update that will be cloud-based. No patient data will leave the hospital. It will assist in operating ACHD clinics, offer statistical support for patient care improvement, facilitate multicenter research, and will be available in a variety of languages. Current CAPS uses the IPCCC (International Pediatric and Congenital Cardiac Code), but codes can also be matched to other coding systems. If you may be interested in knowing more, please contact Gary Webb.
For any question or issue please contact one of the nucleus members.
On behalf of the Working Group Nucleus
Prof Dr Jolien Roos-Hesselink
Chair ESC WG on ACHD
Our mission: To reduce the burden of cardiovascular disease.