Doing Research with Us
Samples Donated to the Biorepository
Our biorepository includes DNA samples of roughly 8000 sample donors. The Register collects samples from single patients, so-called “trios” (patient plus birth parents) and from single families with an accumulation of congenital heart disease. The National Register’s samples are available to researchers worldwide.
In line with prevailing regulations as for guaranteeing data safety and patient protection, we collect and record samples and sample data according to highest scientific standards. As a result, the biosamples we provide for your research are ensured to be of the required quality, verifiable and reusable at any time.
Are you planning a research project? Our regularly updated lists provide you with a first overview of the current sample inventory and according phenotypic features.
Current Sample Inventory
The overview below provides information about the respective number of sample donors of blood and saliva for DNA samples, as well as about the number of sample donors of tissue and others for RNA isolation. It is based on three databases that separately store individual-related data, medical data and sample data. Sample inventories are solely presented in anonymized form. No conclusions about the samples’ origin or sample donors’ identity can be drawn.
- Left obstructions: These include e.g. Coarctation of the aorta , Aortic valve stenosis and Hypoplastic left heart syndrome.
- Right obstructions: These include e.g. Tetralogy of Fallot and Pulmonary valve stenosis.
- Septal defects/vascular malformations: These include e.g. Atrial septal defect, Ventricular septal defect and Atrioventricular septal defects.
- Original anomalies of the great vessels: These include e.g. Transposition of the great arteries and Double inlet left ventricle.
As of May 2023
Using Your Own Samples for Research
In addition, institutions can use their own samples and data for their research. If you wish to do this with the Competence Network for Congenital Heart Defects, you are required to file a notice of the use of own samples and data in order to enable the Central Sample Management to trace back the biosamples used.
Your Contact Persons at the Competence Network
Kompetenznetz Angeborene Herzfehler e. V. | Netzwerkzentrale
Fax: +49 30 45937278