British Paediatric Orphan Lung Diseases (BPOLD)

News

2004

19th November - Announcing the launch of the British Paediatric Orphan Lung Disease Registry (BPOLD) bpold.co.uk

On behalf of the BPOLD committee, I am delighted to announce the launch of BPOLD on 20th January 2005.
The initial aim is to gather minimal patient data on 9 rare lung diseases in children. It is hoped that this information will be a resource for future BPRS researchers to address questions related to these diseases. Dr Adam Jaffe. Download and read the launch letter here.

11th November - Six out of the nine disease pages complete see 'The Diseases'

end-September - Registration available, awaiting ethics committee approval

8th July - Project update with sponsors

6th July - Meeting with Emma Pendleton, ICH R&D Office re: security and confidentiality

22nd June - Meeting with Jo Moon from BTS/BOLD re: ethics, typical response rate

14th March - bpold.co.uk domain name purchased. Hosting service being sought.