Doing Research with Us
The National Register Biobank
Causal Research with a Comprehensive Basis
Being supported by numerous sample donors, the National Register Biobank facilitates exactly this. This is where samples are consistently collected and recorded in accordance with the highest scientific standards.
Good to Know
The biobank of the National Register for Congenital Heart Defects in the BBMRI-ERIC Directory
The biobank of the National Register for Congenital Heart Defects with descriptive information to its NRCHD collection of samples is listed in the BBMRI-ERIC Directory, the largest biobank catalog in the world. The BBMRI-ERIC links biobanks and researchers in Europe to facilitate joint research across Europe, for example on rare diseases, based on centrally collected samples and data. The international institution helps researchers to find the samples and data they need. Publicly accessible it lists quality-defined biobanks whose sample and data collections demonstrably meet the required high ethical and legal standards and thus supports research that is consistently geared to the common and patient welfare of European citizens.
The Appropriate Care at the Right Time
Thanks to approximately 8,000 sample donors, the National Register for Congenital Heart Defects disposes of a comprehensive data collection. Basic research in the fields of congenital heart disease and heart disease diagnosed during childhood and adolescence depends on such data. Research on the genetic causes of named diseases, heart development, as well as myocardial development and cell regeneration aims at improving the prevention, early detection, diagnostics and treatment. Results from basic research can contribute to the possibility that each congenital heart disease patient can receive the appropriate treatment at the right time in the future.
Patient Information, Consent and Sample Collection
The National Register for Congenital Heart Defects consistently collects blood samples, saliva samples and tissue samples from patients of all age-groups, as well as from their biological relatives. This requires the sample donors’ written informed consent to the use and protection of their data and samples for research purposes.
Samples are processed and stored at the Central Biobank Charité (ZeBanC) in accordance with the highest scientific standards. Tissue samples, RNA or serum and plasma samples that are collected during heart surgery or catheter biopsies are processed and stored decentrally, i.e. at the participating hospitals due to technical reasons.
Reproducible Research Results
All samples are administrated centrally at the National Register for Congenital Heart Defects. Along with the sample collection, the National Register collects the sample donors’ individual-related, as well as their medical data across Germany. For this, the register collaborates with the physicians taking part in the Competence Network for Congenital Heart Defects. Parents’ and relatives’ data are additionally collected for family-based studies.
The strictly regulated data and sample management that is in place at the National Register guarantees the reuse, quality, verifiability and comparability of the collected data and samples.
The National Register thus provides researchers across the world with a reliable basis for basic reseach that yields reproducible results.
Doing Research with the National Register Biobank
The Competence Network for Congenital Heart Defects Steering Committee and the National Register Executive Board decide on the performance of studies and the allocation of samples for national and international research projects. Both boards form the competent Data Access Committee. The use of samples also requires the consent of clinicians who have taken the samples. In an advisory capacity, a review board additionally takes part in the decision process. It comprises representatives of the patient associations, as well as representatives from pediatric cardiology, human genetics, basic research, epidemiology and legal science concerned with medical law and ethics. All projects are reviewed by the responsible ethical review board.