Article Text

Audit, research and guideline update
Research in progress: put the orphanage out of business
Free
  1. Andrew Bush1,
  2. Gisela Anthony2,
  3. Angelo Barbato3,
  4. Steve Cunningham4,
  5. Annick Clement5,
  6. R Epaud6,
  7. Carlee Gilbert7,
  8. Lutz Goldbeck8,
  9. Kai Kronfeld9,
  10. Andrew G Nicholson10,
  11. Nicolaus Schwerk11,
  12. Matthias Griese12,
  13. on behalf of the ch-ILD collaborators
  1. 1Department of Paediatric Respiratory Medicine, National Heart and Lung Institute, Imperial College, London, UK
  2. 2Leader, Central Information Office, chiLD EU, University Marburg, Marburg, Germany
  3. 3Department of Pediatrics, University, Padua, Italy
  4. 4Department of Respiratory & Sleep Medicine, Royal Hospital for Sick Children, Sciennes Road, Edinburgh, UK
  5. 5Assistance Publique-Hôpitaux de Paris, Hôpital Armand-Trousseau, Pneumologie pédiatrique, Centre National de Référence des Maladies Respiratoires Rares, Paris, France
  6. 6Department of Paediatrics, Centre Hospitalier Intercommunal Creteil, France
  7. 7UK CHILD Foundation, Liverpool, UK
  8. 8Department of Child and Adolescent Psychiatry/Psychotherapy, University Ulm, Ulm, Germany
  9. 9University Medical Center, MainzInterdisciplinary Center for Clinical Trials (IZKS), Mainz, Germany
  10. 10Department of Thoracic Pathology, Royal Brompton Hospital, London, UK
  11. 11Department of Pediatrics, Pediatric Pulmonology, Allergology and Neonatology, Hannover Medical School, Hannover, Germany
  12. 12Lung Research Group, Children's Hospital of Ludwig, Maximilians University, Munich, Germany

Abstract

Paediatric interstitial lung disease (ILD) is rare and diverse, meaning no single centre will see sufficient children to perform the studies needed to make progress. This EU FP-7 grant will standardise the evaluation of these rare conditions by establishing pan-European multidisciplinary expert panels and establish consensus on treatment protocols and standard operating procedures across Europe. We will work with patient groups to determine optimal treatment end-points and biomarkers. A biobank will be established as a Europe-wide resource for mechanistic studies. Ultimately we aim to do the first randomised controlled trial of a pharmacological treatment in paediatric ILD.

  • PIG
  • ABCA3
  • Allergic Alveolitis
  • Paediatric interstitial lung disease
  • NEHI
  • Surfactant protein
  • Pulmonary vasculitis

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