Twin study: same same, but different?
It has already been proven in some studies that there can be delays and limitations in the physical, but also in the mental development and quality of life of patients with congenital heart defects at a young age. While it seems obvious to consider the heart defect and its treatment as the cause of this difference, it is not known how the same child would have developed without the heart defect.
What are the causes?
Genetic predispositionPre-disposition, individual support and also a person’s environment play a major role in intellectual development. Therefore, the experts at the German Heart Centre Munich want to find out whether the heart defect and its treatment alone are the cause of possible limitations or whether other factors play an important role.
In cooperation with the National Registry for CongenitalCongenital. Heart Defects, the team of experts is studying identical and fraternal twin children where at least one sibling has a congenital heart defect and the other does not. Various tests are carried out to check whether the two have developed differently or not. The study team hopes to gain a better understanding of how possible limitations in the mental or physical development of children with congenital heart defects arise, so that they can then receive the best possible treatment.
The neuro-cognitive development and quality of life of patients with congenital heart defects is a highly topical issue. Through the research in Munich, the heart patients participating throughout Germany can benefit directly from the results, as a precise evaluation of their condition is carried out and, if necessary, funding can be initiated. The study is not limited to children – the participating twin pairs can be between 3 and 99 years old.
Detailed project title
“Neuro-cognitive development and health-related quality of life in patients with congenital heart disease – same same, but different?”
The goals at a glance
- Better treatment of children with heart disease
- Early recognition of possible restrictions
- Targeted therapy approaches
- Determination whether other factors play an important role
Duration
April 2019 until June 2022
Project partner
National Register for Congenital Heart Defects
Funding
Study hotline
We will be happy to answer your questions about the project and the process and to arrange a suitable appointment for you on the study hotline +49 (0)176 – 30664150.
Study registration
German Clinical Trials Register DRKS00021087
International registered report identifier (irrid): DERR1-10.2196/26404.
Publication
- Remmele J, Helm PC, Oberhoffer-Fritz R, Bauer UM, Pickardt T, Ewert P, Tutarel O. A National Comparative Investigation of Twins With Congenital Heart Defects for Neurodevelopmental Outcomes and Quality of Life (Same Same, but Different?): Protocol for a Prospective Observational Study. JMIR Res Protoc. 2021 May 13;10(5):e26404. https://pubmed.ncbi.nlm.nih.gov/33983133/
- Remmele J, Helm PC, Oberhoffer-Fritz R, Bauer UMM, Ewert P. What about mental health in children with a congenital heart defect in comparison with their healthy twin sibling? – First preliminary results of the “Same same, but different?” project. Clin Res Cardiol (2021). DOI https://doi.org/10.1007/s00392-021-01843-w.
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Remmele J, Helm PC, Oberhoffer-Fritz R, Bauer UMM, Ewert P. A controversial topic: HrQoL in twins with congenital heart defect and without – First preliminary results of the “Same same, but different?” project. (Cardiology in the Young 2021)
- Remmele J, Helm PC, Oberhoffer-Fritz R, Bauer UMM, Ewert P. What about mental health in children with CHD compared to their healthy twin? – First preliminary results of the “Same same, but different?” project. (Cardiology in the Young 2021)
