Article Text

PDF

International registry for idiopathic pulmonary fibrosis
  1. A Guenther1, (coordinator),
  2. O Eickelberg1,
  3. K T Preissner1,
  4. R Chambers2,
  5. G Laurent2,
  6. A Wells3,
  7. B Crestani4,
  8. C Vancheri5,
  9. P Bonniaud6,
  10. P Camus6,
  11. G Schmitz7,
  12. W Klepetko8,
  13. J Schultze9,
  14. D Vossmeyer10,
  15. P Stumpf11
  1. 1
    University of Giessen Lung Center, Giessen, Germany
  2. 2
    University College London, London, UK
  3. 3
    Royal Brompton Hospital, London, UK
  4. 4
    Hopital Bichat, INSERM U700, Paris, France
  5. 5
    University of Catania, Catania, Italy
  6. 6
    University of Burgundy, INSERM U866, Dijon, France
  7. 7
    University Hospital, European Lipidomics Initiative, Regensburg, Germany
  8. 8
    Cardiothoracic Surgery, University Hospital Vienna, Vienna, Austria
  9. 9
    University of Bonn, Life and Medical Sciences Bonn, Bonn, Germany
  10. 10
    JERINI AG, Berlin, Germany
  11. 11
    TransMit GmbH, Giessen, Germany
  1. Dr A Guenther, University of Giessen Lung Center, Giessen 35392, Germany; andreas.guenther{at}uglc.de

Statistics from Altmetric.com

We have read with great interest the recent review by Wilson et al stating the case for an international registry for idiopathic pulmonary fibrosis (IPF).1 This timely proposal prompts us to inform the community that, effective from 1 January 2008, the European Commission is funding a new network entitled “European IPF Network: Natural course, Pathomechanisms and Novel Treatment Options in Idiopathic Pulmonary Fibrosis” (eurIPFnet; www.pulmonary-fibrosis.net). Among many other scientific goals, the eurIPFnet will establish a European-wide, internet-based registry (eurIPFreg) and biobank (eurIPFbank) for IPF which, in principle, will be open to all interested collegues. The opening of this registry is scheduled for mid 2008 (please follow news on www.pulmonary-fibrosis.net). Key features of this registry will be the collection of all relevant baseline and follow-up clinical data from patients with IPF as well as bronchoalveolar lavage fluid, blood and tissue specimens. Rigorous multidisciplinary verification of the diagnosis will be undertaken by external experts. We plan to quantify the frequency of respiratory infections, extent of pulmonary hypertension, quality of life and response to treatment modalities. Using the collected biomaterials, we intend to investigate novel surrogate parameters of disease progression, establish new disease-specific markers and identify novel candidate genes relevant to the pathophysiology of IPF. Our goals exactly concord with those outlined by Wilson et al1 and we confidently expect that the European IPF registry will foster research on and facilitate the implementation of clinical trials in IPF. Interested collegues are encouraged to participate and preregister (use “contact” on www.pulmonary-fibrosis.net).

REFERENCES

View Abstract

Footnotes

  • Competing interests: None.

Request permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

Linked Articles

  • Letters
    J W Wilson R M du Bois T E King