Patient / parent section
Information booklet "Living with chILD"
In view of the rarity of Children’s Interstitial Lung Diseases – chILD, there are only a very limited number of doctors significantly familiar with them, especially in terms of diagnosing and treating them.
A search of the internet for further information unfortunately is more troubling than beneficial. Frequently people develop anxiety, fear or melancholy when trying to deal with these chronic diseases, because of the limited knowledge about them and their causes.
With aid from the European Union, an international expert panel has been formed, that has set the goal to correct this situation. An additional goal is to place the needs of the children afflicted with these diseases and their families first. This booklet is only a single building block in this project. Of course, it cannot replace the need for talking with your child’s treating doctor. Rather, it is intended to provide supplementary information regarding the condition of your child.
chILD factsheet for parents and patients
Patient Support
How can I participate as a patient?
You are attending with your child a large center which is actively submitting patients. Such centers specialized in chILD have obtained an ethics vote from their local review boards. After you have given your consent, your local physician can submit your data and biomaterials; when complete, the peer-review process and all other activities can be started.
As an alternative and after the appropriate consents, your local physician may collect all necessary information and biomaterials from you and send them directly to the central register, where the data will be entered.