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Working groups

The Action has six workgroups, each with one or two leaders.

 

WG1: Network of scientists (Lead: Nadia Nathan and Daniel O’Toole) unites basic researchers to identify existing biological models to optimize experimental research in chILD: 

  • Identifying and validating existing models of ILD
  • Building the infrastructure with which cells, tissues & tools for studies in vitro and in vivo can be exchanged

 

WG2: Monitoring disease progression (lead Frederik Fouirnaies Buchvald) unites junior and senior academics to assess and validate different outcome measures to monitor disease progression.

  • Develop a short Patient Reported Outcome (PRO) in different languages
  • Validate the value of this PRO in different diseases
  • Identifying relevant outcome measures

 

WG3: chILD phenotype across the life course (lead Matthias Griese and Antonio Moreno Galdo) unites junior and senior academics to be trained in proper use of the chILD clinical database to optimize data entry and collaboration.

  • Documented training and routine usage of the chILD database
  • At least 3 physicians specialized in chILD care per country
  • At least 1 chILD reference team per participating country

 

WG4: Feeding problems in chILD (lead Nural Kiper and Raffaella Nenna) unites academics, parents and patients, and dieticians to improve growth and dietary intake in children with chILD.

  • Develop a questionnaire to evaluate feeding problems
  • Involve patients and parents and evaluate their needs

 

WG5: Transition from paediatric to adult care (lead Andrew Bush and Martina Vasakova) unites academics working in the adult and paediatric field to generate a smooth transition protocol for children with chILD.

  • Identify current practice in adult and paediatric care in the different participating countries using a questionnaire
  • Contact academics working in adult and paediatric care in the different countries by a countries’ representative
  • Involve patients and parents and evaluate their needs

 

WG6: Planning and coordination of clinical studies (lead Steve Cunningham and Eitan Kerem) establishes already existing databases and explores the possibilities to collaborate with industry.

  • draw on the expertise gained with the randomised clinical trials in chILD in chILD-EU and the much wider adult ILD clinical trial experience;
  •  plan, set up and coordinate observational and interventional  multicentre trials in chILD, investigating the effectiveness of known therapies and of novel agents in humans.