Cases to be included in the register
Long term observation
All cases of suspected or proven children's interstitial lung disease, in particular also unclear cases will be included for diagnosis and observation.
Current focus:
- Persistent tachypnea of infancy (“NEHI”)
- All familial cases
- All children with a lung biopsy
- All other cases YOU are interested in
- We are interested in prevalent cases, i.e. those where chILD is already diagnosed, and in incident cases, i.e. newly occurring cases of chILD.
What will be observed?
- initial diagnosis process including molecular diagnosis
- long term follow up: baseline, 6 month, then annually
- standard clinical measures, social and health economic outcomes
Aim of study
To better understand the course and burden of the disease and how different practices may influence outcomes.
Patient information / Informed Consent
Parent informed consent must be obtained for inclusion in these studies. Patient information sheets and consent forms will be emailed to clinicians who identify to chILD-EU a potential case or can be downloaded here.
Interested clinicians, patients, parents and families
A benefit for your participation is that after providing all information and materials needed you will receive an expert advice concerning treatment and a diagnosis by an expert board including pneumologists, pathologists and radiologists and if applicable and desired also an genetic analysis to exclude a genetic background as source for your disease. For participation please download and read the information sheets and consent forms. Please use these for discussion with your local respiratory paediatrician and inform them that you wish to be included in the study. Your local respiratory paediatrician will be able to link with the chILD-EU team to enable this.
If you have or suspect a patient with children interstitial lung disease or rare lung disease, please contact us.
We will then email appropriate supporting documentation and establish a contact with the research team.
