Registries: Pregnancy and GUCH

Pregnancy and Heart Disease Registry

What is the Pregnancy and Heart Disease registry?

This survey is designed to assess the management and outcome of pregnancy in patients with structural heart disease (mainly congenital heart disease, valvular heart disease and cardiomyopathy). There is a lack of data in this area and a very large registry will provide information about current practice, the complications that occur and possibly the reasons why these complications occur.
We hope it will produce information that will improve the survival of women with heart disease having babies and will help the survival of their babies.

The survey has been developed and the case record form designed by a collaboration of the Congenital Heart Disease and Valve Disease working Groups.
This is an international survey and therefore anybody in the world who deals with this type of patient can enrol their centre as a participating centre. The centre does not have to be in Europe. The patients will be included prospectively but in addition to this any mothers giving birth after 01 December 2006 can have their data entered retrospectively.
Data will be analysed overall and also by country and by world region

More infomation

Read more about background and objectives

To participate, please follow instructions available here

European registry for ICD and CRT Devices in Pediatrics and Adults with congenital heart disease

What is the Euripides device registry?

The Euripides device registry is a joint project of the AEPC arrhythmia working group and the ESC Working Group for adults with congenital heart disease. The collaboration of the two groups allows enrolling pediatric patients and adults with congenital heart disease without the need for repeat enrollments after the transition or transfer period.

The Euripides device registry is a web-based follow-up database, which will cover implant data and annual followup of ICD, ICD-CRT and CRT devices. A steering committee will manage the database, report to the AEPC and ESC, and answer research questions. Every submitting person can apply for data release for research projects.

Why the Euripides device registry?

ICD and CRT device therapy is still rare in children and adults with congenital heart disease. A combined international effort is mandatory to gain a thorough insight in optimal ICD or CRT device therapy in these patient groups more rapidly.

The Euripides device registry will allow large-scale research and will answer numerous ICD or CRT device therapy questions.

Who needs and benefits from an ICD or CRT device?

ICD and CRT device therapy has proven benefits in adults with acquired heart disease. The indication for ICD and or CRT therapy in pediatric patients or adults with congenital heart disease is still unclear. Many pediatric patients or adults with congenital heart disease may not fit any guideline. The Euripides registry will show us who may benefit from an ICD and or CRT device, and what the future holds for our patients.

How to implant an ICD or CRT device?

Standard ICD and CRT implant techniques are described for adults with structurally normal hearts. Small patient size and structural cardio-vascular abnormalities necessitate modified implant techniques in young patients and adults with congenital heart disease. The Euripides registry will show us which implant techniques may be ideal for children and adults with congenital heart disease.

More infomation

Please download the ICD flyer here

Join us!

Join research in pediatric patients and adults with congenital heart disease who get an ICD or CRT device implanted.
Share your experiences with ICD or CRT device therapy and allow others to improve their patient care. Benefit from a large-scale database to optimise patient care and conduct research.

Any Questions?

Please get in touch with one of the registry founders