ChILD Research Networks
ChILD is rare and little research and resources are invested into finding answers for children affected by ILD. Here, we highlight some organisations that we work with to help find some of those answers.
British Paediatric Orphan Lung Disease (BPOLD) is a registry collecting nine rare lung diseases in children in the UK. The registry will provide epidemiological data and inform research projects, which will increase on understanding and ultimately improve treatment strategies for chILD children. Please discuss including your child in the registry with your child’s clinician. Also for ease, you can download and print the forms here to hand to your child’s clinician.
The chILD-EU project is currently comprised of 10 academic partners from 5 European countries. Their goal is to determine the long term course of childhood interstitial lung diseases (chILD), optimize diagnosis as well as therapy, initiate quality assurance protocols and promote clinical and scientific progress. Please visit the chILD EU website for more information here.
To sign your child up into the registry, please discuss this with your child’s respiratory consultant.
ChILDRN (ChILD Research Network)
The Children’s Interstitial and Diffuse Lung Disease Research Network (chILDRN) is a multi-disciplinary group of experts all working together to discover better diagnostics, underlying causes, improved treatments, and ultimately cures for all forms of chILD. Based in the US and working alongside chILD Foundation US, ChILDRN has created many chILD “Centres of Excellence” and are working with may partners such as ChILD EU to collaborate on clinical trials and longitudinal studies. To learn more about ChILDRN please visit their page on the ChILD Foundation US website here.