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Cases to be included in the Register

Long term observation

We include:

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. 

 

Study Flow Chart

Follow the "I have a case" button.
Observations made at study entry to the study (minimum dataset).

 

  • "I have a case" notification: Minimal data (symptoms, signs, hypoxaemia, radiological abnormality, duration, child initials, site details, email address)
  • Referral information for Peer Review (see Peer Review information page): Complete dataset. Quality of Life questionnaire + utilisation of health care

 

All cases will be further observed at 6 and 12 months, and then annually.

  1. 6 (+/-1) months post "I have a chILD": Minimal data (Outcome, HR, RR, SpO2, Treatment) +  CXR + Spirometry if able + utilisation of health care
  2. 12 (+/-2) months post "I have a chILD": Review of case and diagnosis. To include Minimal data (Outcome, HR, RR, SpO2, Treatment)  +QOL + CXR + Spirometry if able.
  3. Annual review of case and diagnosis. To include Minimal data (Outcome, HR, RR, SpO2, Treatment) + QoL + CXR + Spirometry if able + utilisation of health care

 

 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. 

 

Interested parents / clinicians please contact

Parents

You may wish to 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. 

 

Clinicians

If you have or suspect a case of chILD, please identify these details via the website here.

We will then email appropriate supporting documentation and establish a contact with the research team.