ASSOCIATION
FOR EUROPEAN
PAEDIATRIC
CARDIOLOGY
Patient information and declaration of consent to the study
Euripides – European Registry for ICD and CRT Devices in Pediatrics and Adults with
Congenital Heart Disease
Dear patient,
Dear mothers and fathers,
Since 2000, the National Register for congenital heart defects (registered association) has been collecting data on
congenital heart defects in order to gain insight into the present situation of those affected.
Still, our main objective is to contribute to improving the medical and psychosocial care for patients with congenital heart
disease. To achieve this aim, we depend on gathering as much information as possible from you. Thanks to your help, we
have already been able to gather comprehensive knowledge over the past years. This is to be further expanded. The more
we know, the better we can detect existing problems and develop adequate strategies for their solution.
That is why the already existing National Register has been complemented with another, specially designed sub-register
that particularly collects data of those patients that are being/were treated by defibrillators (ICD) or cardiac
resynchronisation therapy (CRT). Only little is as yet known about the use of ICD and CRT in patients with congenital heart
disease. By collecting respective data on a large scale and over a long period of time, we hope to get an overview of longterm success and complications associated with the applied treatment options. Thus, we hope to contribute to the
improvement of available therapies.
The Euripides Registry is a joint project of working groups of the Association for European Paediatric Cardiology (AEPC)
and the European Society of Cardiology (ESC). It is carried out under the umbrella of the Competence Network for
Congenital Heart Defects/National Register for congenital heart defects. This cooperation guarantees the option that both
children and adults with congenital heart disease can be enrolled in the registry without the need to register them a second
time upon entering adulthood. By updating and extending the recorded data once a year, courses of disease can be
observed over a long period of time, which will lead to an improved understanding and assessment of influencing factors.
You/your child have/has been chosen as a potential participant in the Euripides registry, as you/your child have/has
received either a defibrillator or cardiac resynchronisation therapy. We would therefore like to record your/your child’s data
in our registry and ask you to give us your consent.
Data protection information
The data are collected for the purposes of the above mentioned study. Data storage and data processing are subject to the
existing data protection regulations. The respective proceeding has been approved by the Berlin data protection official. The
data are analysed and published anonymously, that is, without any relation to your person/child. The existence of two
separate databases guaranties that personal data that allow establishing a connection to yourself/your child are stored
separately from the medical data and that only staff members with respective access rights may view these data. All staff
members are sworn to secrecy.
Of course, participation in this study is voluntary and no costs whatsoever will be incurred by you. You can object to the
further processing of your/your child’s data at any time and without giving reasons, even if you agreed to participate in this
study earlier. In case you decide against participating, this will lead to no disadvantages on your/your child’s part. If you
terminate your participation, no further data will be recorded and the data collected so far are anonymised (which means
that you/your child cannot be identified by means of these data).
The study manager is in charge for data processing (address and phone number can be found below).
The study has been revised and approved by the competent ethics committee.
Should you have any further questions, we will gladly be at your disposal. Please contact your attending rhythmologist or
contact us directly:
Dr. med. Ulrike Bauer, managing director
Competence Network for Congenital Heart Defects/National Register for congenital heart defects (registered
association)
Augustenburger Platz 1, 13353 Berlin
e-mail: euripides@kompetenznetz-ahf.de
If you have read the previous information carefully, feel you understand everything and want to take part in the Euripides
Registry, we would like to ask you to give us your consent on enclosed consent form so that we may store and process
your/your child’s data that are recorded for this purpose.
With kind regards and best wishes
the team of the Euripides Registry
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ASSOCIATION
FOR EUROPEAN
PAEDIATRIC
CARDIOLOGY
Declaration of consent to the participation in
Euripides – European Registry for ICD and CRT Devices in Pediatrics and Adults with
Congenital Heart Disease
Personal data of the patient
Surname:
__________________________________
First name:
__________________________________
Date of birth:
__________________________________
I have received, read and understood the written patient information on the above mentioned study and was
given the opportunity to clarify all open questions on this topic.
I am aware that participation is voluntary and that I may withdraw my consent at any time and without giving
reasons; this will lead to no disadvantages on my part.
Declaration of consent to data processing
I consent to the storage of my/my child’s coded data in the Euripides Registry and to them being used in
anonymised form for potential publications.
Any data collections beyond that require an additional consent on my part.

Under the premises of the preceding patient information I agree to the data collection and
consent to the processing of my/my child’s data. For this purpose I authorise my attending
physicians to release medical information and allow that the data required for the study
are passed on to the staff members of the Euripides Registry.

I do not want to take part in this data collection.
__________________________________
_________________________________________
Place, date
signature of patient/legal representative
_____________________________________
Place, date
_____________________________________________
signature/stamp of consulting physician
We thank you for your participation and wish you all the best.
If further questions arise, please do not hesitate to contact us at any time.
Team of the Euripides Registry
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