Socio-demographic factors can be significantly associated with the subjective well-being of adults with CHD. In order to assist the surgical successes of the past decades, which have ensured the survival of most of these patients into adulthood, increased attention should be paid to these domains in the care of adults with CHD.

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The concern of sexuality should be integrated into the regular consultations of these patients. The strong association between sexual health and subjective wellbeing emphasises the need for diagnosis and, if necessary, treatment of these problems.

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Congenital heart disease (CHD) is the most frequent birth defect (0.8%–1% of all live births). Due to the advance in prenatal and postnatal early diagnosis and treatment, more than 90% of these patients survive into adulthood today. However, several mid- and long-term morbidities are dominating the follow-up of these patients. Due to the rarity and heterogeneity of the phenotypes of CHD, multicenter registry-based studies are required. The CHD-Biobank was established in 2009 with the aim to collect DNA from patients and their parents (trios) or from affected families, as well as cardiovascular tissues from patients undergoing corrective heart surgery for cardiovascular malformations. Clinical/phenotype data are matched to the International Paediatric and Congenital Cardiac Code (IPCCC) and the International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10). The DNA collection currently comprises samples from approximately 4200 participants with a wide range of CHD phenotypes. The collection covers about 430 trios and 120 families with more than one affected member. The cardiac tissue collection comprises 1143 tissue samples from 556 patients after open heart surgery. The CHD-Biobank provides a comprehensive basis for research in the field of CHD with high standards of data privacy, IT management, and sample logistics.

Congenital heart defects (CHD) are the most common congenital malformation; there is no clearly defined clinical picture. Although, thanks to medical progress, most of those affected survive into adulthood, they remain chronically ill throughout their lives and require specific care. By enabling nationwide cooperation and interdisciplinary research, the Competence Network for Congenital Heart Defects can provide and optimize this care. Clinical studies concerning clinical manifestations and recent diagnostic and treatment options can make use of the collected data. Being the core project of the Network, the National Register for congenital heart defects (registered association) registers all patients with a CHD throughout Germany. This data provides a basis for epidemiologic studies concerning quality of life and psychosocial aspects. Thus, integral care and swift transfer of knowledge between science and practice can be achieved. Meanwhile, pediatric guidelines could be developed and raised to S2 level. Additionally, the Register's results allow an assessment of the present situation of cardiac malformations, which is to be further evaluated in current studies. Particular attention is paid to the prevalence of CHD and adult patients' needs. In the long term, the concept of integrated care, and especially the idea of multidisciplinarity, is to be realized within the scope of a "health care database". All in all, the Competence Network for Congenital Heart Defects plays a substantial part in detecting needs and deficits of the current care for patients with CHD and helps developing strategies for an adequate and efficient care, while guaranteeing a high degree of transparency for those concerned.