UPDATE FROM HTAD/VASCERN – June 2019
More research on pregnant women with congenital heart disease and mechanical valves – like Marfan Syndrome and other hereditary aortic diseases Registry Of Pregnancy And Cardiac disease– ROPAC
We are welcoming more collection of data about pregnancies in Marfan women. By sharing the experiences of a huge number of pregnancies, there is a lot of medical knowledge to be gathered about the difficulties that a pregnancy means to a woman with Marfan Syndrome (MFS) and other congenital heart diseases, like LDS, Familial TAAD or vEDS. Therefore,–the Registry Of Pregnancy And Cardiac disease ROPAC was initiated. Jolien Roos-Hesselink, co-chair of the European Society of Cardiology (ESC) congenital working group, talked about the hope the registry means to women with congenital heart disease, at the HTAD-WG meeting in May.
Why is ROPAC important?
The simple answer is that it is very big, about 60 countries are involved so far. The collected information can help pregnant Marfan women in the future to even better care before, during and after their pregnancy.
Why should you as a patient insist on being included?
This simple act means that you help other pregnant Marfan women and that you support research being done on the Marfan Syndrome. Based upon the information gathered from the registry, there will be studies or simply more evidence for treating pregnant women in a special manner. It is an act of kindness and generosity to insist on being included in the registry. All your data is safe, protected and anonymised when used so your identity is safe. Now you can include data from 12 months back so even if you have already delivered a baby, your data can be entered. Please do!
Why could a doctor be reluctant to include you?
The first time a doctor includes a patient in the registry it will take him an hour. The next time it is much quicker. Often when you have a rare disease, not all health care professionals are aware of all the good initiatives that exist for us, so it is up to you as a patient to inform about the registry and to ask to be included.
Where can I read more about ROPAC and other ESC Registries?
Here – Registries & Surveys your treating doctor can find more information.
Lise Murphy, Co-chair, on behalf of the patients´ group (Elena de Moya Rubio, Françoise Steinbach, Tony Pugliese) at HTAD, VASCERN lisemurphy@gmail.com.
As you probably know, HTAD means Heritable Thoracic Aortic Diseases. The ePAG HTAD is a network of patient organisations related to HTAD, working hand in hand with the doctors in the European Reference Networks for Vascular Diseases. For more info HTAD/VASCERN
