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Who is Treating Your Heart? → OptAHF Special

Too Much Pressure on the Right Ventricle

Tetralogy of Fallot (ToF) is one of the most common severe heart defects. Four different malformations affect the cardiovascular system. How does the heart develop after corrective surgery? What are avoidable treatment risks?

A new study provides information.
Endocarditis After Valve Replacement

Endocarditis is one of the major risks associated with congenital heart defects, especially after pulmonary valve replacement. Three factors favor the disease, as shown in a first large study.

To the research result
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Focus on your research. We provide the basics. From the research inquiry through to the final publication, you can benefit from our experience in setting-up registers and performing multicenter studies.

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We Count on You.

From donating to shopping online to becoming a sponsoring member. There are many different options to support research in the field of congenital heart disease.

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Because We Can Only Accomplish it Together.

Investigating congenital and pediatric-acquired heart disease is a special task and responsibility. Since 2003, our network, including our research infrastructure, has been enabling finding the answers to many pressing questions.

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Marc coming from his annual routine follow-up examination, Wolfram Scheible für Nationales Register — Marc coming from his annual routine follow-up examination

Marc, assistant tax consultant, 27 years

“When I was a child, I didn’t like the fact that I wasn’t allowed to do many things. I find life as an adult with congenital heart disease much easier.”

Read Marc’s story

ACHD researcher Prof. Dr. Dr. med. Gerhard-Paul Diller, Nationales Register | UKM — ACHD researcher Prof. Dr. Dr. med. Gerhard-Paul Diller

Prof. Dr. Dr. med. Gerhard-Paul Diller, ACHD Researcher

“Over 50,000 register members donate their data and samples. This is a big act of faith, which places a great responsibility on us.”

Go to "Meet the Researcher"

PD Constanze Pfitzer, M.D., Pediatrician

"Heart children usually do well in school. However, microcephaly can affect that. Early diagnosis is important."

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Current Issues

About our Research Activities

Newborn in hospital bed. Tetralogy of Fallot is nowadays corrected in infancy if possible.

Research Results | Medicine and Healthcare

Too Much Pressure on the Right Ventricle

Tetralogy of Fallot (ToF) is one of the most common severe heart defects. Four different malformations affect the cardiovascular system. How does the heart develop after corrective surgery? What are avoidable treatment risks? A new study provides information.

To the research result

Father in skin-to-skin contact with his premature baby.

Research Projects | Medicine and Healthcare, Everyday Life

Child With Congenital Heart Defect? How Do Fathers Deal With It?

Nothing can prepare you for life with a child with a congenital heart defect. For the successful treatment of patients on the long term, the involvement of fathers is also crucial. We want to know more about this.

To the research project

An elderly couple looks at a map while hiking.

Patients | Medicine and Healthcare, Healthcare Research

Growing Old With a Congenital Heart Defect?

OptAHF was the first comprehensive study to examine life with a congenital heart defect into old age. It is the largest care study ever conducted in this area. We interviewed those responsible for the study about the results.

To the heart researcher talk

A Strong Voice for Hearts

Jan Delay supports our research with a notable message.

“I support independent research that actually benefits those who rely on it to survive. Solidary and collaborative research that overcomes boundaries, also in one’s own mind.” Hats off to you for making this possible by being a Register member and research promoter. I’m happy to see you keeping at it.”

View video message

News From the Competence Network and the Register

Visualization of a genome analysis. Where are the spelling mistakes in the genome?

Pressemitteilungen | Medicine and Research, Genetics

Smarter Through Whole Genome Sequencing?

Could whole genome sequencing help improve diagnosis, treatment and prevention of severe congenital heart defects? That's what a new study is investigating.

To the press release

A congenital heart defect is different at every stage of life. This makes specialized well-connected medical care necessary. The new OptAHF special shows what matters.

Press Release | Medicine and Healthcare | Healthcare Research

Who is Treating Your Heart?

With OptAHF, researchers at the Competence Network for Congenital Heart Defects have for the first time conducted comprehensive research on medical care for congenital heart defects into old age. The new OptAHF-Special provides information about the results.

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We take care of your research infrastructure

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Our Infrastructure for Your Research

The Competence Network provides its infrastructure also for your multicenter research projects. We support you with the setup of registers conforming to patient data protection laws.

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Dates

Heart-Explorer Magazine

PD Dr. med. Fabian Kari ist Kinderherzchirurg am Universitäts-Herzzentrum Freiburg-Bad Krozingen.

Herzerforscher - Extra | Interview

Herausforderung komplexe TGA

Was ist eine komplexe TGA? Wie wird sie korrigiert? Und was bedeuten die unterschiedlichen OP-Verfahren langfristig für die Patienten? Darüber haben wir mit dem Kinderherzchirurgen Fabian Kari gesprochen.

To the interview

Keeping distance, wearing a mask, observing sanitary regulations: The coronavirus pandemic has changed our everyday life for an indefinite period of time.

Heart-Explorer Magazine | Gespräch

Heart-Explorer - Extra | Talk

Since the beginning of the coronavirus crisis, we have been living in a state of emergency. What does that mean for adults with congenital heart disease? We talked about this with heart patient Eva Niggemeyer and ACHD specialist Gerhard-Paul Diller.

To the interview

Karla Völlm, Ehrenkonsulin der Westfälischen Wilhelms-Universität, unterstützt mit ihrer „EMAH Stiftung Karla Völlm“ die medizinische Forschung und Versorgung für Erwachsene mit angeborenen Herzfehlern.

Heart-Explorer - Extra | Interview

Die Mäzenin der Herzmedizin

Ohne den Einsatz der „EMAH Stiftung Karla Völlm“ wäre in der Versorgung und Erforschung angeborener Herzfehler vieles nicht möglich. Doch es ist ein Lebenswerk, das immer wieder unter Druck gerät.

Zum Herzerforscher-Extra

OptAHF-Spezial

Child With Congenital Heart Defect?

Become a Member

Microcephaly - a Risk?

Become a Member

Join Our Research

Research Duration: Many Lifetimes!

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Covid-19 Vaccination

Why We Do Research

Too Much Pressure on the Right Ventricle

Endocarditis After Valve Replacement

Join Our Research

We Count on You.

Because We Can Only Accomplish it Together.

Auf die Schnelle

Research Makes Survival Worth Living.

Stimmen aus dem Forschungsverbund

Current Issues

Smarter Through Whole Genome Sequencing?

Who is Treating Your Heart?

Updated Corona Special 2022

Julia Remmele awarded research prize

Generation Change at the Competence Network for Congenital Heart Defects

Nach Corona-Pause: 7. Watt-Moor-Ultra-60

Ausgezeichnet

Kiel Researchers Discover Further CHD Genes

DZHK Paper of the Month

InGene-ious Cardiology

Evaluierung des Pulsoxymetrie-Screenings gestartet

Anticoagulants in Patients with Congenital Heart Defects

Austausch, Beratung, Interessenvertretung bei AHF

New Corona Special

Abschied von einem Visionär

Children with Congenital Heart Defects Sit too Much

Widespread Participation in the Corona Survey

Wir trauern um Ingram Schulze-Neick

Schwere Herzfehlbildungen früh erkennen

DGPK Posterpreis für S-BAHn-Studie

Angeborene Herzfehler - ein unterschätztes Forschungsgebiet?

Paper of the Month

Wir sind soweit!

Startschuss für den 6. Watt-Moor-Ultra

Herzkinder sind gut in der Schule

Gender-Gap in der AHF-Forschung

Danke Micha!

Adee Moni!

KNAHF startet KI-Forschung

Über das Kompetenznetz Angeborene Herzfehler

Rettung schwerstkranker Kinder bedroht

Herzschrittmacher: Zu teuer für ein Kind?

Neue Studie: Optimal versorgt bei AHF?

Neue Technologie erspart Kindern Herz-OP

DGPK-Forschungsförderpreis 2018

Press Release | Medicine and Healthcare

Die Transition ist die große Hürde

Wissen Sie genug über Ihr Endokarditis-Risiko?

Endlich Pflicht: Pulsoxymetrie-Screening

About our Research Activities

Too Much Pressure on the Right Ventricle

Child With Congenital Heart Defect? How Do Fathers Deal With It?

Growing Old With a Congenital Heart Defect?

A Strong Voice for Hearts

News From the Competence Network and the Register

Smarter Through Whole Genome Sequencing?

Who is Treating Your Heart?

Our Infrastructure for Your Research

Dates

ESC Congress 2023 in Amsterdam

17th Lange Symposium in Berlin

DGK Herztage 2023 in Bonn

Heart-Explorer Magazine

Herausforderung komplexe TGA

Heart-Explorer - Extra | Talk

Die Mäzenin der Herzmedizin

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