CHD PLATFORM
Establishment of a European parent- and patient-oriented information and communication platform on Congenital Heart Defects
| Coordinatore | NATIONALES REGISTER FUER ANGEBORENE HERZFEHLER EV
Organization address
address: Augustenburger Platz 1 contact info |
| Nazionalità Coordinatore | Germany [DE] |
| Totale costo | 824˙457 € |
| EC contributo | 745˙000 € |
| Programma | FP7-HEALTH
Specific Programme "Cooperation": Health |
| Code Call | FP7-HEALTH-2007-A |
| Funding Scheme | CSA-SA |
| Anno di inizio | 2008 |
| Periodo (anno-mese-giorno) | 2008-02-01 - 2010-01-31 |
Partecipanti
| # | ||||
|---|---|---|---|---|
| 1 |
NATIONALES REGISTER FUER ANGEBORENE HERZFEHLER EV
Organization address
address: Augustenburger Platz 1 contact info |
DE (BERLIN) | coordinator | 0.00 |
| 2 |
BUNDESVERBAND HERZKRANKE KINDER EV
Organization address
address: KASINOSTRASSE 66 contact info |
DE (AACHEN) | participant | 0.00 |
| 3 |
Childrens Heart Federation
Organization address
address: Great Eastern Street 2-4 contact info |
UK (LONDON) | participant | 0.00 |
| 4 |
FORENINGEN FOR HJERTESYKE BARN
Organization address
address: Sandakerveien 99 contact info |
NO (OSLO) | participant | 0.00 |
| 5 |
FUNDACION MENUDOS CORAZONES
Organization address
address: CALLE VALDESANGIL 19 contact info |
ES (MADRID) | participant | 0.00 |
| 6 |
HJAERTEBARNSFOERENINGEN
Organization address
address: DRAKENBERGSG 47 contact info |
SE (STOCKHOLM) | participant | 0.00 |
| 7 |
WIEBKE LESCH STRATEGISCHE KOMMUNIKATION
Organization address
address: BOTZOWSTRASSE 25 contact info |
DE (BERLIN) | participant | 0.00 |
Mappa
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Obiettivo del progetto (Objective)
'With this support action we intend the establishment of a European parent- and patient-oriented, web-based information and communication platform that helps to build up a large European network on congenital heart defects (CHD PLATFORM). The aim of this platform is to vertically cross-link medical organisations and facilities, physicians and scientists to patients, parents, patients’/parents’-organisations, and in addition to increase public awareness of the growing number of children/patients in our society suffering from congenital heart defects. The intended CHD platform will provide a comprehensible and target group optimised supply of information and should initiate discussion and dialogue between all groups. Background information about new medical research should be processed in close cooperation between scientists, physicians, editors, patients and parents. The platform will also provide media-oriented events such as news, interviews, fact sheets etc. The website is planned to be offered at least partially in different European languages. In addition, information workshops for all concerned groups should be arranged for dialogue and knowledge-transfer, and press conferences launched to inform the public, politics, non-governmental organisations etc. With the establishment of CHD PLATFORM we intend • an intensified dissemination of knowledge and information • an increased spirit of co-operation • the consideration of patients’ and parents’ opinions and points of view • building up trust within patient and parent communities, and strengthening the willingness to participate in research studies • a higher significance and outcome of medical research and clinical studies CHD PLATFORM would support other projects that are intended in the FP7-Health Programme (2007 B, Calls 2.4.2-4 and 4.2-1, see below) as accompanying measure, and promote medical research in Europe concerning this group of patients which continuously grows in size throughout the world.'
Introduzione (Teaser)
A new online platform brings together patients, parents and medical professionals to exchange views and knowledge about congenital heart defects (CHD).
Descrizione progetto (Article)
Since the advent of the internet, sufferers of numerous diseases have found ways to share their experiences, learn from each other and even find relief through the exchange of information. But not all the information in the virtual world has been reliable. One enterprising EU-funded initiative, CHD Platform, has created a powerful online 'arena' for patients, parents and medical professionals to enable discussions on congenital heart disease.
The project has achieved a web-based information and communication platform on the disease to crosslink patients with the medical community. The website, Corience.org, offers comprehensive information in English, German and Spanish.
Cooperation with renowned scientists from various fields and a rigorous review process has resulted in easy-to-understand articles on the website. A newsletter and brochure supplements in different languages were also made available to update non-English speakers about the recent developments and achievements of the CHD Platform.
Arguably the project's (and website's) major achievement was to relay research findings to patients, fostering dialogue and debate on health research issues of interest. Integrating the perspective of all stakeholders is helping to sow mutual trust between the medical and patient communities.
Networking was also promoted through three European workshops in Barcelona, Berlin and Bruges to reach as many actors in the CHD field as possible. This has encouraged fruitful exchange of ideas and information on developments focusing on research and care related to the disease. The workshops also strengthened the engagement of different patient and parent organisations, as well as the establishment of several new ones. Integrating players and participants from eastern Europe was another milestone that was successfully achieved through these workshops.
In the future, key healthcare issues and patient-related information will continue to be part of the website. By empowering those who have congenital heart disease, suffering, fear and confusion will be alleviated. This also means misinformation will be tackled and correct treatment will be encouraged, resulting in cost efficiencies for both patients and hospitals.