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Who is Treating Your Heart? → OptAHF Special

When the Right Ventricle Takes Over

Das Auftreten einer Herzschwäche zählt zu den Folgerisiken bei Erwachsenen mit angeborenen Herzfehlern, deren rechte Herzkammer die Funktion der linken übernimmt. Medikamente können helfen. In der Nachsorge ist dringend darauf zu achten.

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Learn to Swim!

Like a fish in water? Learning to swim is good for everyone – and it is a life-saver. Too many children with congenital heart defects are not taught to swim. This is risky.

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Therapy Progress Only through Registry Research

Multicenter research into congenital heart defects is becoming increasingly important. This is also shown by recent study results. Registers and biobanks are particularly important in this context.

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Strong Duo for Children with Congenital Heart Defect

The Special Olympics World Summer Games impressively demonstrated what sport means for all people. New studies show how important this is also for children and young people with congenital heart defects.

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Deadly Danger: Immune Deficiency in Congenital Heart Defects

Immune deficiency appears to be more common in congenital heart defects than previously thought. And it can be life-threatening. That's the finding of a new study based on data from the Barmer Health Insurance Fund.

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Join Our Research

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.

Join the research and sponsoring efforts
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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Auf die Schnelle

Voices from the Research Network

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

Thanks to refined surgical techniques, transposition of the great arteries (TGA) can nowadays be well treated.

Research Results | Medicine and Healthcare, Cardiac Surgery

Rare Combination: TGA with "Hole in the Heart" and LVOTO

TGA is one of the most common serious congenital heart defects. Thanks to research, most of those affected can now live with it for a long time and increasingly better after correction. This is also true for the rare combination of TGA, VSD and LVOTO. However, many important questions remain unanswered.

To the research result

Surviving cancer. Regular cancer screening increases the chances of cure, relief and prevention of CHD-related complications.

Research Projects | Medicine and Healthcare, Surveys

Cancer Risk in Congenital Heart Disease

Cancer is a particular risk for adults with congenital heart disease. Prevention and early detection are critical. How are these services accepted? What are the potential barriers? A new registry study gets to the bottom of these questions.

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Heart failure in adults is one of the consequential risks of congenital heart disease. Regular follow-up by ACHD specialists can save lives.

Research Projects | Medicine and Healthcare

Risk of Heart Failure with ACHD

Heart failure accounts to one of the consequential risks in adults with congenital heart disease (CHD). But how common is heart failure in ACHD and what is the situation regarding care?

About the research project

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

Living to a ripe old age with a congenital heart defect? This depends on specialized care and patient-focused research

Press Release | Medicine and Healthcare | Healthcare Research

Better Medical Care into Old Age

OptAHF paves the way for the treatment and further research of congenital heart defects. The Innovation Committee of the German Federal Joint Committee (G-BA) has funded the long-term project. The results will now be used for the further development of guidelines.

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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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Heart Explorer Magazine

Dr. Fabian Kari is a pediatric cardiac surgeon at the University Heart Center Freiburg-Bad Krozingen.

Herzerforscher - Extra | Interview

The Challenge of Complex TGA

What is a complex TGA? How is it corrected? And what do the different surgical procedures mean for patients in the long term? That's what we talked about with the pediatric heart surgeon Fabian Kari.

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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 | Conversation

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.

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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 Special

Surgery or Catheterization?

Become a Member

Microcephaly - a Risk?

Become a Member

Join Our Research

Research Duration: Many Lifetimes!

Donate for Medical Progress

Covid-19 Vaccination

Why We Do Research

When the Right Ventricle Takes Over

Learn to Swim!

Therapy Progress Only through Registry Research

Strong Duo for Children with Congenital Heart Defect

Deadly Danger: Immune Deficiency in Congenital Heart Defects

Join Our Research

We Count on You.

Because We Can Only Accomplish it Together.

Auf die Schnelle

Research Makes Survival Worth Living.

Voices from the Research Network

Current Issues

Constanze Pfitzer receives the DGPK Science Award 2024

Better Medical Care into Old Age

Therapy Progress Only through Registry Research

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

Evaluation of Pulse Oximetry Screening Started

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

Rare Combination: TGA with "Hole in the Heart" and LVOTO

Cancer Risk in Congenital Heart Disease

Risk of Heart Failure with ACHD

A Strong Voice for Hearts

News From the Competence Network and the Register

Better Medical Care into Old Age

Who is Treating Your Heart?

Our Infrastructure for Your Research

Heart Explorer Magazine

The Challenge of Complex TGA

Heart-Explorer - Extra | Talk

Die Mäzenin der Herzmedizin

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