Current Projects
ChILD CRC
European Respiratory Society, Children’s Interstitial Lung Disease Clinical Research Collaboration (ChILD CRC)
Children’s interstitial lung disease is extremely rare and can be difficult to diagnose. Significant funding received in 2012 enabled the creation of ChILD EU. ERS members created a bio-bank, database and instigated observational and interventional studies. Although significant progress was made over the course of the FP7 4 year funded project it was recognised that continued drive would be required to make the changes that would benefit patients.
With CRC funding in place our aim is to develop critical interest in these rare diseases for early career clinicians, researchers, scientists and industry.
Contact
European Respiratory Society, Clinical Research Collaboration for Children's Interstitial Lung Disease (ChILD CRC)
Key Aims
1 | Enhance clinician engagement in ChILD
The ChILD EU project was initially established in a limited number of countries: Germany, France, Italy, Turkey and the UK. One of the key aims of CRC is to include all countries within the EU and other countries out with the EU. Coming together via a Clinical Assembly, it is expected that we will have a clinical lead from each country who will be responsible for promoting the CRC in their country at national paediatric respiratory meetings, identifying and engaging parent organisations and facilitating translation of CRC ChILD EU documentation to their own language.
We have also developed a Webinar programme to deliver a programme of ChILD discussions by international experts to 200 participants in the EU and globally.
2 | To develop a global minimum dataset
There are 3 established global databases, we are currently working on a common minimal dataset terminology to enable clinicians to support standardised formatted data across all platforms that could rapidly enable integration of data when required on a global scale.
3 | To integrate parent knowledge and skills within our ChILD development
Our links with parent groups remains another key element in our work and we continue to liaise with the European Lung Foundation (ELF) to facilitate this. Parents of ChILD patients can feel very isolated. Engagement and input of parents is essential to: raise awareness in the general population and build networks of parents ensuring they are kept fully informed about the condition, treatments and latest scientific advances including research opportunities. The CRC Parent Advisory Group (PAG) are using online tools to reach out to parents including development of a new website www.childlungfoundation.org and the use of social media.
4 | To engage pharmaceutical companies in ChILD
To date pharmaceutical interest in ChILD has been limited. Through the activities of the CRC we hope to enable pharmaceutical companies to engage and develop products for ChILD conditions.