Binding Procedures and Regulations
Regulations for the Use of Data and Samples
The National Register for Congenital Heart Defects (hereinafter referred to as NRAHF) was founded in 2003 by the three German cardiac societies as a nonprofit scientific association. The statutory purpose is the collection of data and samples of patients with congenital heart disease, as well as of their families, and the provision of these data and samples for research. The NRAHF is the core project of the Competence Network for Congenital Heart Defects (hereinafter referred to as KNAHF).
The biorepository was implemented as a part of the NRAHF in 2009. Consent to participation in the biorepository is connected to participation in the register. The biorepository includes blood samples for the extraction of DNA, RNA, plasma and serum, saliva samples for the extraction of DNA, as well as cardiac tissue samples from cardiac surgery which were collected according to uniform standards. A uniform identity management facilitates central data and sample administration in the NRAHF.
Register data and biosamples are used as a basis for research on congenital heart disease and heart disease in underage individuals and are to be available to interested scientists across the world.
Guidelines for Publications
These guidelines regulate the authorship and submission of scientific publications that draw upon data from the Competence Network for Congenital Heart Defects (KNAHF)/National Register for Congenital Heart Defects (NRAHF). The regulations apply solely to publications (including letters to the editor) for scientific journals.