Literature DB >> 23429832

Research in progress: put the orphanage out of business.

Andrew Bush1, Gisela Anthony, Angelo Barbato, Steve Cunningham, Annick Clement, R Epaud, Carlee Gilbert, Lutz Goldbeck, Kai Kronfeld, Andrew G Nicholson, Nicolaus Schwerk, Matthias Griese.   

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.

Entities:  

Keywords:  ABCA3; Allergic Alveolitis; NEHI; PIG; Paediatric interstitial lung disease; Pulmonary vasculitis; Surfactant protein

Mesh:

Year:  2013        PMID: 23429832     DOI: 10.1136/thoraxjnl-2012-203201

Source DB:  PubMed          Journal:  Thorax        ISSN: 0040-6376            Impact factor:   9.139


  5 in total

1.  Surfactant proteins in pediatric interstitial lung disease.

Authors:  Matthias Griese; Elke Lorenz; Meike Hengst; Andrea Schams; Traudl Wesselak; Daniela Rauch; Thomas Wittmann; Valerie Kirchberger; Amparo Escribano; Thomas Schaible; Winfried Baden; Johannes Schulze; Heiko Krude; Charalampos Aslanidis; Nicolaus Schwerk; Matthias Kappler; Dominik Hartl; Peter Lohse; Ralf Zarbock
Journal:  Pediatr Res       Date:  2015-09-16       Impact factor: 3.756

Review 2.  Pulmonary alveolarproteinosis in children.

Authors:  Andrew Bush; Rishi Pabary
Journal:  Breathe (Sheff)       Date:  2020-06

3.  New clinical practice guidelines on the classification, evaluation and management of childhood interstitial lung disease in infants: what do they mean?

Authors:  Jennifer A Wambach; Lisa R Young
Journal:  Expert Rev Respir Med       Date:  2014-08-20       Impact factor: 3.772

4.  Impact of biobanks on research outcomes in rare diseases: a systematic review.

Authors:  Monique Garcia; Jenny Downs; Alyce Russell; Wei Wang
Journal:  Orphanet J Rare Dis       Date:  2018-11-12       Impact factor: 4.123

5.  Assessing the feasibility of a web-based registry for multiple orphan lung diseases: the Australasian Registry Network for Orphan Lung Disease (ARNOLD) experience.

Authors:  K Casamento; A Laverty; M Wilsher; J Twiss; E Gabbay; I Glaspole; A Jaffe
Journal:  Orphanet J Rare Dis       Date:  2016-04-18       Impact factor: 4.123

  5 in total

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