The benefits of research into ChILD will help to:

• Increase recognition of ChILD by doctors in the community and the more information known about a disease, the faster a diagnosis is made.
• Inform the development of targeted treatments for ChILD.

Establishing a patient registry (data collected from patients across multiple centres) is an effective method of collecting information about these conditions.

Clinical research trials into two of the most commonly used medications - Hydroxychloroquine and Prednisolone - have been approved.

This research will aim to provide evidence for:

• In which types of ChILD, these medications could be used, by analysing the benefits and side effects.
• When is the best time to start using these medications and when to stop.
• The trial on Hydroxychloroquine is ongoing in Germany and will be expanded soon to Poland, Austria, Turkey, Italy, Spain and Portugal.
• The trial on Prednisolone (in hypersensitivity pneumonitis) was started in Germany, however had to be suspended due to lack of resources from grants (see chILD-EU website).

The chILD-EU Register and Biobank is a platform which helps to peer-review submitted cases initially to get a diagnosis and disease classification by a multi-disciplinary board of experts.

The system is a web-based databank (patient registry) which also collates information about the long-term course of these diseases from specialist ChILD centres across Europe.

Cohorts of patients with the same disease are built and can be treated in clinical studies. The platform currently performs the first large international study in ChILD.

• Confirmation of your child's diagnosis.
• Any findings or new insights into the treatment of your child's disease during the course of this research will be shared with you.
• Through comparison of health care costs (and treatment costs) across Europe, this will help with establishing a baseline costing standard - this may improve financial remuneration from health insurers over time (this is often a problem with rare diseases).

Permission needs to be granted by the parents of the child before any data can be collected. Parents are provided with full information and asked to sign a consent form. Taking part is voluntary and you can withdraw from the study at any time.

Once permission is gained, the data collected does not include any patient identifiable information and includes:

• Your child's symptoms and quality of life
• Clinical data
• Results of routine medical investigations
• Biological material previously collected from your child during routine testing is stored in a central Biobank

Almost all rare lung diseases can be included into the register. Some examples are listed here:

http://www.klinikum.uni-muenchen.de/Child-EU/en/child-eu-register/services/mandatory_inclusion_of_lung_diseases/index.html

http://www.kinderlungenregister.de/index.php/en/information-for-clinicians/pulmonary-disorders-to-include

You may be able to participate if you are attending a large centre which actively submits patients (see participating centres). Centres which specialise in ChILD and who are participating will 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 will start.

An alternative option, and after the appropriate consents, your local physician may collect all necessary information and biomaterials from you, send them directly to the central register, where data will be entered.

Discuss your options with the healthcare professionals treating your child.

An international survey aimed to understand more about the challenges that parents and children with ILD face. An online survey was available in 9 languages from August - November 2017.

The survey was planned by the ERS Clinical Research Collaboration (CRC) parent advisory group.

Summary of results:

156 respondents from 13 countries. The most challenging aspects identified were:

• not knowing how the disease will progress (82%)
• anxiety/depression (74%)
• time management (67%)
• managing daily activities with your child (64%)
• feeding issues (60%)

On rating aspects of treatment and care,

• 100% wanted better interaction between clinicians
• 94% to know how to get a second opinion
• 80% the option for genetic counselling

Future research direction included causes, genetics, risk factors, diagnostics and new treatments and reduction of impact of the condition on patients over the long-term.

Read the survey summary report (PDF)

An article was published in March 2015 which presented the findings of a UK-based, web-based survey, which was completed by 37 families. A number of perspectives were identified that need to be addressed by healthcare professionals looking after their children as well as for future planning of services. These included:

• improved communication and especially the need for written information
• psychological support
• feeding issues
• improved specialist nurse support for children with ILD

Read the abstract of this article at: Childhood interstitial lung disease: Family experiences; Carlee Gilbert, Andrew Bush, Steve Cunningham Pediatr. Pulmonol. 2015; 50:1301-1303