Medicine and Healthcare
Same Same, but Different?
What Impact Does Congenital Heart Disease Have on the Neurocognitive Development?
Scientific name of the study
Neurocognitive Development and Health-related Quality of Life in Patients with Congenital Heart Disease and their Twin Siblings - Same Same, but Different?
The heart and brain belong together. It is vital for our health that both organs work well together. The heart is in charge of supplying the brain with sufficient oxygen to mature and for the single brain functions to develop. This is essential for our survival as well as for our quality of life. But what is the situation in children, adolescents and adults with congenital heart disease?
Only little is known so far regarding the question how this disease, which is the most frequent malformation worldwide, as well as its treatment and potential secondary diseases, impact brain development and the neurocognitive functions and skills. How does the brain cope with an initial lack of oxygen in the course of its development? How does it react to corrective surgery that involves a heart-lung machine or the administration of medication that is essential for survival? And what kind of effect does the neurocognitive development have on the patients’ quality of life?
We are seeking more detailed answers to these questions with an extensive study and are hoping for the support of affected parents and their children, as well as of adolescent and adult patients and their twin siblings. The study aims at adjusting the advice and therapy provided to patients with congenital heart disease accordingly and thus being able to offer better support.
Who Can Take Part?
Identical and fraternal twins aged between three and 99 years who are enrolled in the National Register and of whom at least one has congenital heart disease are eligible to take part. Also patients who have not been taking part in the Register so far can sign up together with their twin sibling(s).
What we Know so Far
A connection between congenital heart disease and brain development has been established. Various studies have shown that newborns with congenital heart disease frequently have acidosis and low APGAR values at the beginning of their life. It has also been shown that patients’ neurocognitive development can be impaired after surgery involving a heart-lung machine as compared to heart-healthy individuals.
Same Basics, Same Development?
However: Is the obvious assumption that congenital heart disease and its treatment cause the observed developmental differences really correct? In fact, the brain passes through various developmental stages in which it is exposed to all kinds of external influence in the course of its maturation. How would the same child have developed without congenital heart disease? What type of impact do factors involved such as the genetic predisposition, individual support and the socioeconomic environment have on neurocognitive development?
Answering these questions requires a comparison of patients with congenital heart disease and healthy subjects who have the same genetic conditions, as well as the same socioeconomic environment. Only if the results of such a comparison deviated from each other significantly would this be explainable by congenital heart disease. Identical and fraternal twins aged between three and 99 years of whom at least one has congenital heart disease fulfill the conditions for us to be able to investigate these questions.
In this context, we will administer some tests which are internationally approved, established and age-appropriate in each case to all study participants. Children and adolescents who would like to take part and whose parents agree may solve different exciting tasks in a playful way. This includes, for instance, guessing and explaining words. This enables us to learn more details about the part of the brain that is responsible for language. In connection with jigsaws and picture puzzles, we will learn more about the brain’s capacity of visual thinking. Furthermore, observing how quickly children and adolescents are able to recognize and match signs will help us to determine their IQ, which provides information regarding the ability of logical reasoning and the speed of recognizing correlations. Adult participants will do an age-appropriate intelligence test and complete a questionnaire to assess their physical activity. In addition, children will be able to try out their balancing, jumping and throwing skills, find out how well they can handle pens for painting and writing, test their skills in stringing beads and much more. On the basis of this, we will be able to learn more about the brain functions that play a role in physical abilities.
What about the Quality of Life?
When it comes to quality of life, everything boils down to the question of how all study participants themselves rate their wellbeing in their everyday routine. You will be able to answer this question in a corresponding questionnaire that is appropriate to your age. Only if we are able to asses your quality of life will we get a differentiated impression that will help us to provide even better advice and medical care to people with congenital heart disease in the future. In this connection, the young and the old will be able to learn all sorts of interesting and helpful details regarding their neurocognitive abilities. Furthermore, parents will be able to get a clear idea of their children’s development status.
So…: It pays to take part! We are looking forward to doing the quizzes with you. To reduce the effort on your part, our research teams will travel nearby to you. Use our flyer to sign up with your children. It is available for download on our website. We will of course keep you updated about our research results.
The research project is funded by the Fördergemeinschaft Deutsche Kinderherzzentren e. V.
Sign up for this study
In light of current events, please note the following important information regarding study participation:
Due to the current situation, all examination visits will be suspended until further notice. Study participants that have already signed up have been informed of the rescheduling.
Important Notice: Please do sign up for participation despite all this. You will get an appointment for examination as soon as this is possible again.
Up-to-date expert information regarding the current coronavirus situation and how to deal with it as a patient or family member of a patient with congenital heart disease can be found here.
In charge of the project:
Oktay Tutarel was born in 1976 and is the head of the section “Adults with Congenital Heart Defects”, as well as a senior physician at the Department of Paediatric Cardiology and Congenital Heart Defects at the German Heart Centre Munich, the clinic associated with the Technical University of Munich. More
Oktay Tutarel graduated in human medicine at the Hannover Medical School (MHH). It was also there that he did his residency in internal medicine and cardiology. After a fellowship at the Adult Congenital Heart Centre and National Centre for Pulmonary Hypertension at the Royal Brompton Hospital in London (Great Britain), he qualified as a professor with research conducted on the subject of “biomarkers in adults with congenital heart disease” in 2014. In 2016, the certified ACHD specialist transferred to the German Heart Center Munich.
He is an elected member of the nucleus of the Work Group on “Congenital Heart Disease in Adulthood” (AG „Kongenitale Herzfehler im Erwachsenenalter“) of the German Cardiac Society (DGK) and a member of the nucleus of the “ESC Working Group on Grown Up Congenital Heart Disease” of the European Society of Cardiology (ESC). As a representative of the DGK, he has been involved in the ACHD Task Force since 2018. He is a member of the Competence Network for Congenital Heart Defects and also acts as a member of the research network’s Steering Committee.
Julia Remmele was born in 1982. As a research assistant at the German Heart Center Munich, she is in charge of the project management of the research project "Same, same, but different," among others. More
The certified physiotherapist did her Bachelor of Science degree in physiotherapy at the Dresden International University. To complete her Master’s degree, which she did at the Technical University of Munich (TUM), Julia Remmele conducted research on the motor capability and health-related quality of life in children and adolescents with congenital heart disease in 2017. She is currently writing a doctorate on the topic of “the neurocognitive developmental stage and health-related quality of life in patients with congenital heart disease” at the Technical University of Munich. Julia Remmele has been a junior member of the Association of European Pediatric and Congenital Cardiology (AEPC) since 2018.