Twins with at least one with CHD and their immunisation status in direct comparison-are both twins complying with the German immunisation recommendations?

Background: Patients with congenital heart defects (CHDs) are at higher risk for infectious diseases. This may partly be due to frequent hospital stays and the associated exposure to pathogens. This study aims to provide a comprehensive overview of immunisation coverage among twins in which at least one twin has CHD.

New Insights into the Education of Children with Congenital Heart Disease with and without Trisomy 21.

: Patients with congenital heart disease (CHD), especially as a concomitant syndromal disease of trisomy 21 (T21), are at risk for impaired neurodevelopment. This can also affect these patients' education. However, there continues to be a research gap in the educational development of CHD patients and T21 CHD patients.

Microcephaly is associated with impaired educational development in children with congenital heart disease.

Objectives: This study aims to evaluate the school careers of patients with congenital heart disease (CHD) and microcephaly.

Methods: An exploratory online survey was conducted on patients from a previous study on somatic development in children with CHD in 2018 ( = 2818). A total of 750 patients participated in the online survey (26.

Endangered patients with congenital heart defect during transition-Germany-wide evaluation of medical data from National Register for Congenital Heart Defects (NRCHD).

Background: Appropriate care over the entire lifespan is essential in the population with congenital heart defect since the number of patients with congenital heart defect is increasing steadily worldwide. More than 90% survive into adulthood nowadays. The transition from pediatric to adult care in patients with congenital heart defect is a major challenge in clinical practice and often fails.

Erectile Dysfunction in Men With Adult Congenital Heart Disease: A Prevalent but Neglected Issue.

Background And Objectives: For adult men with congenital heart disease (ACHD), data on erectile dysfunction (ED) is limited. We aimed to assess the frequency of ED, its role in patient-physician communication and to identify parameters predicting ED.

Methods: Male ACHD ≥18 years registered at the German National Register for Congenital Heart Defects were invited to participate in an online questionnaire about sexual health.

Secundum Type Atrial Septal Defect in Patients with Trisomy 21-Therapeutic Strategies, Outcome, and Survival: A Nationwide Study of the German National Registry for Congenital Heart Defects.

(1) Secundum type atrial septal defect (ASD II) is usually considered a relatively benign cardiac lesion amenable to elective closure at preschool age. Patients with trisomy 21 (T21), however, are known to have a higher susceptibility for pulmonary vascular disease (PVD). Therefore, T21 children may present with clinical symptoms earlier than those without associated anomalies.

Ventricular assist devices in paediatric cardiomyopathy and congenital heart disease: An analysis of the German National Register for Congenital Heart Defects.

Background: Ventricular assist devices (VAD) are increasingly used in patients with end-stage heart failure due to acquired heart disease. Limited data exists on the use and outcome of this technology in children.

Methods: All children (<18 years of age) with VAD support included in the German National Register for Congenital Heart Defects were identified and data on demographics, underlying cardiac defect, previous surgery, associated conditions, type of procedure, complications and outcome were collected.

Optimizing Care for Adults with Congenital Heart Disease: Results of a Conjoint Analysis Based on a Nationwide Sample of Patients Included in the German National Register.

(1) Background: Congenital heart disease (CHD) requires lifelong specialized care. Failure to follow up and gaps in care are common in this group and lead to increased morbidity/mortality. We evaluated patients' perceived needs and expectations regarding specialized care using state-of-the-art statistical and market research techniques based on a nationwide sample of CHD patients.

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.

Background: Due to the increased survival rates of patients with congenital heart defects (CHD), associated disorders are an increasing focus of research. Existing studies figured out an association between CHD and its treatment, and neurodevelopmental outcomes including motor competence impairments. All these studies, however, compared their test results with reference values or results of healthy control groups.

Surgery during pregnancy - results of a German questionnaire.

Objectives: Worldwide, not only the number of female medical students, but also of female surgeons increases. Simultaneously, younger generations take a closer look to their work-life balance. With this in mind, it seems necessary to evaluate the expectations of female surgeons in particular with respect to pregnancy during their surgical career.

Education of Children With Cyanotic Congenital Heart Disease After Neonatal Cardiac Surgery.

Background: The aim of the study was to evaluate the educational achievement of patients diagnosed with univentricular heart physiology (UVHP) or transposition of the great arteries (TGA) after neonatal cardiac surgery.

Methods: An exploratory online survey was performed with patients registered with the National Register for Congenital Heart Defects in Germany. For this publication, a subgroup analysis was conducted among patients diagnosed with TGA (n = 173; 36.

Physical Activity Among Children With Congenital Heart Defects in Germany: A Nationwide Survey.

In children with congenital heart defects (CHD), a sedentary lifestyle should be avoided and usually WHO recommendations on physical activity (PA) are supposed to be followed. In order to obtain representative data of the actual amount of PA (and potential influencing factors) in children with CHD we performed a nationwide online survey. All patients aged 6-17 years registered in the German National Register for CHD were contacted by email and asked to participate in the survey using the comprehensive questionnaire of the "Motorik-Modul" from the German Health Interview and Examination Survey for Children and Adolescents (KiGGS), thus allowing the comparison with a representative age-matched subset of 3.

Pulmonary hypertension after shunt closure in patients with simple congenital heart defects.

Background: Patients with simple shunt lesions, such as atrial septal defect (ASD), ventricular septal defect (VSD) and persistent arterial duct (PDA) remain at risk of developing pulmonary hypertension (PH) even after correction of their cardiac defect. We aimed to assess the contemporary prevalence of PH in a well characterized nationwide group of patients based on the German National Register for Congenital Heart Defects.

Methods And Results: We included all patients >16 years of age with an isolated diagnosis of ASD, VSD or PDA.

Educational achievement of children with congenital heart disease: Promising results from a survey by the German National Register of Congenital Heart Defects.

Background: Survival rates of children with congenital heart disease (CHD) have increased significantly in the decade. There is now increased interest in the long-term outcome and quality of life of these children.

Aims: To assess the educational achievement of patients with CHD in Germany.

Cardiac resynchronization therapy in congenital heart disease: Results from the German National Register for Congenital Heart Defects.

Background: Cardiac resynchronization therapy (CRT) is an established option for patients with heart failure. Limited data exists on indications and outcome of CRT in contemporary congenital heart disease (CHD) patients.

Methods And Results: All patients with CRT registered in the German National Register for Congenital Heart Defects were systematically identified.

Patients with congenital heart defect and their families support genetic heart research.

Background: Congenital heart disease (CHD) affects up to 1% of live births the etiology remains relatively poorly understood. Thus, cardiac research is needed to understand the underlying pathomechanisms of the disease. About 51 000 CHD patients are registered in the German National Register for Congenital Heart Defects (NRCHD).

Congenital heart disease patients' and parents' perception of disease-specific knowledge: Health and impairments in everyday life.

Background: Children and adolescents with congenital heart disease (CHD) and their families require qualified combined medical and psychosocial information, care, and counseling. This study aimed to analyze CHD patients' and parents' perception of disease-specific knowledge, state of health, and impairments experienced in everyday life, as well as factors influencing these perceptions.

Materials And Methods: Analyses were based on a survey among patients/parents recruited via the German National Register for Congenital Heart Defects (NRCHD).

Dynamics in prevalence of Down syndrome in children with congenital heart disease.

Unlabelled: We assessed the dynamics in the prevalence of children with congenital heart disease (CHD) and Down syndrome in Germany with regard to phenotype, severity, and gender. Data from patients with CHD and Down syndrome born between 1980 and 2014 were analyzed, who are registered with the German National Register for Congenital Heart Defects. One thousand six hundred eighteen CHD patients with Down syndrome were identified.

Educational level and employment status in adults with congenital heart disease.

Unlabelled: Purpose Through this study we aimed to assess the educational level and employment status of adults with CHD in Germany.

Methods: Data were acquired from an online survey carried out in 2015 by the German National Register for Congenital Heart Defects. A total of 1458 adults with CHD participated in the survey (response rate: 37.

Are adults with congenital heart disease informed about their risk for infective endocarditis and treated in accordance to current guidelines?

Background: Adults with congenital heart disease (ACHD) have an increased risk for infective endocarditis (IE). In the last decade, the recommendations for IE prophylaxis have changed substantially. The knowledge level of patients about IE and IE prophylaxis has not been studied.

Changing prevalence of severe congenital heart disease: Results from the National Register for Congenital Heart Defects in Germany.

Objective: To assess the prevalence of congenital heart disease (CHD) in Germany in relation to phenotypes, severity and gender.

Design: Cross-sectional registry study.

Setting: We analyzed data from patients with CHD born between 1996 and 2015.

Transition in Patients with Congenital Heart Disease in Germany: Results of a Nationwide Patient Survey.

Background: A growing number of adults with congenital heart disease (ACHD) pose a particular challenge for health care systems across the world. Upon turning into 18 years, under the German national health care system, ACHD patients are required to switch from a pediatric to an adult cardiologist or an ACHD-certified provider. To date, reliable data investigating the treatment situation of ACHD patients in Germany are not available.

Is having a job a protective factor? Employment status and state of medical care as subjectively perceived by adults with CHD in Germany.

Background: Most patients born with CHD nowadays reach adulthood, and thus quality of life, life situation, and state of medical care aspects are gaining importance in the current era. The present study aimed to investigate whether patients' assessment depends on their means of occupation. The findings are expected to be helpful in optimising care and for developing individual treatment plans.

Eisenmenger syndrome and long-term survival in patients with Down syndrome and congenital heart disease.

Objective: To characterise patients with trisomy 21 (Down syndrome, DS) based on the data of the German National Register for Congenital Heart Defects, to identify changes in the availability of surgical therapy over time and to analyse the impact of these changes on developing Eisenmenger syndrome (ES) as well as survival.

Methods: Out of 1549 patients with DS with congenital heart disease in the National Register for Congenital Heart Defects, 894 patients (55% female, mean age 17.5 years) had a post-tricuspid shunt lesion (atrioventricular septal defect 69.