To most families, the diagnosis “congenital heart disease” is a strong blow. Suddenly they are faced with a number of questions and worries. At the same time, teenagers and adults with congenital heart defects want to know whether they can lead a normal life despite their condition. Health professionals in particular are aware that reliable information is a substantial part of good treatment and helps patients deal with their affliction. The website http://www.corience.org/ was created to fulfill this need for information. It is dedicated to all those who have to deal with congenital heart defects personally or professionally.
Corience complements the doctor-patient relationship
Articles about sports, pregnancy, education, and employment are as integral a part of the platform as detailed explanations of the different types of heart defects, diagnoses, and treatment methods. Lists of web links, updates on the latest research, interviews with specialists, and personal stories of patients and their families complete the offer, which is unparalleled in its information bandwidth. All articles are written by international journalists and reviewed by leading medical experts. This ensures that they are both easy to understand and scientifically sound.
The information provided on Corience can complement the doctor-patient relationship. Many doctors and health professionals throughout Europe already use the information about heart defects in their consultations, because it is highly accessible and reliable. They also recommend http://www.corience.org/ as a trustworthy knowledgebase for patients to use at home. Prof. Szatmári, former president of the Association for European Paediatric Cardiology (AEPC) and member of the Corience Advisory Board, actively supports the project and emphasises the value and significance of the information and networking provided through Corience.
A useful tool for health professionals
Doctors and scientists can access an easy-to-use database containing up-to-date information about recent research activities related to congenital heart defects. This database is based on and aligned with clinicaltrials.gov – a registry of publicly and privately funded clinical studies around the world.
The website is available in English and Spanish, with German and Polish language versions to follow. Five European parent umbrella organizations, a communication consultancy, and the German National Registry for Congenital Heart Defects are the founders of Corience. The project is currently funded by the European Union.
Please visit Corience at the ESC, Booth A 83 and online at http://www.corience.org/.