ILD Registry Bulletin 2 - October 2016

The ILD Registry is a national longitudinal database for the collection of data relating to two disease areas: IPF and sarcoidosis. Launched in 2013, we currently have 47 hospitals taking part in this important programme, with a further 28 in the process of obtaining approval. There are now over 1,200 patient records held on the Registry (with over 970 IPF records and over 270 sarcoidosis records). In this issue we will be highlighting the increased use of EBUS-TBNA as a diagnostic tool in sarcoidosis.

Robina Coker - PortraitThe BTS ILD Registry is now providing unique, real-time insights into referral patterns, presentation, mode of diagnosis and management of UK patients with pulmonary sarcoidosis.  Education about sarcoidosis and its varied presentations is clearly important for physicians, including those working in primary care, to reduce delays in referral. Training in and access to EBUS-TBNA is vital for secondary care centres managing these patients. Attention to co-morbidity is essential when considering treatment. Clinical trials of immunosuppressive agents, and updated guidance on management of common symptoms, including fatigue, should be future priorities. - Dr Robina Coker, Consultant in Respiratory Medicine, Hammersmith Hospital and member of the BTS ILD Registry Steering Committee

Current Topics and Developments

There have been a number of developments in the Registry over the last few months.

At the end of June the Registry received Scottish National Caldicott Approval from NHS Scotland’s Public Benefit and Privacy Panel. This is excellent news, as the approval covers all sites in Scotland and means the process for joining the Registry is quicker and easier for Scottish sites than ever before.

Professor Monica Spiteri presented the ILD Registry at the 2016 ERS Congress in London in September. In addition to our IPF poster and our sarcoidosis poster we also showcased the ILD Registry in a spoken session regarding insights from registries around the world. These were all very well received, generating interest and raising the profile of our work. Our thanks to all the centres who contributed data to the Registry.

Professor Monica Spiteri will also be presenting the ILD Registry at the BTS Winter Meeting, which will be held in London from 7th to 9th December. Professor Monica Spiteri will be giving a presentation on the ILD Registry during the Audit and Quality Improvement session, to be held on Thursday 8th December from 1:45 to 3:15 in the Abbey room. For more information on the Winter Meeting please visit /bts-learning-hub/bts-summer-and-winter-meetings/winter-meeting-2016/

The increasing use of EBUS-TBNA as a diagnostic tool in sarcoidosis

Data from the Registry indicate that endobronchial ultrasound-guided trans-bronchial needle aspiration (EBUS-TBNA) is now the most commonly used method of non-surgical tissue sampling used in the diagnosis of pulmonary sarcoidosis at participating sites. EBUS-TBNA was used as a diagnostic tool in 32% of cases recorded over the period January 2013 to September 2016. Over this same period, endobronchial biopsy, transbronchial biopsy and mediastinoscopy were used in 11%, 15% and 13% of cases respectively (Figure 1).

Bullletin - Issue 2 Figure 1

 Reviewing available Registry data for complete years (the three year period of 2013 – 2015), EBUS-TBNA was the most common non-surgical tissue sampling method each year (Figure 1). Additionally, since January 2013, Registry data have shown that the use of EBUS-TBNA has noticeably increased over time, rising from 26.2% in 2013 to 48.3% in 2015 (a 22.1 percentage point increase). By comparison, over the same period, other biopsy methods did not show the same steady increase in popularity (Figure 2). For the years 2013 to 2015 endobronchial biopsy was used as a diagnostic tool in 8.9%, 6.9% and 14.8% of cases, transbronchial biopsy in 18.0%, 10.3% and 11.5% of cases, and mediastinoscopy in 13.1%, 14.8% and 14.8% of cases.

Bullletin - Issue 2 Figure 2

The increasing popularity of EBUS-TBNA compared to other non-surgical biopsy methods could be accounted for by its high diagnostic value and comparatively low complication rate. We welcome your views on this topic and encourage you to share your experiences with us using the details provided at the end of this bulletin.

You may also be interested in

In July, Action for Pulmonary Fibrosis released its report Fit for the future: Future-proofing care for patients with IPF. If you would like to view this report please visit: http://www.actionpulmonaryfibrosis.org/research/

SILA has launched its first Welsh sarcoidosis support group, initially meeting in Cardiff. If you have a patient who may be interested why not let them know? Email info@sila.org.uk or visit http://www.sila.org.uk/support-groups for further information.

BLF hosts a number of support groups for patients with IPF. If you have a patient who may be interested they can find their nearest BLF IPF support group by visiting: https://www.blf.org.uk/support-in-your-area

Contact us

Would you like to get involved in the BTS ILD Registry? If you want your hospital to participate in the Registry please do get in touch with us. Our Registry team will give you all the information you need and can help you with the Caldicott approvals process. Contact registry@brit-thoracic.org.uk 

We would also appreciate any feedback you have on our Lung Registry programme. Many of the changes we make to the Registry are in direct response to feedback from those taking part.

Acknowledgements

BTS would like to thank clinicians and patients at participating sites for the use of their data. For a full list of sites currently contributing data to the ILD Registry, and to view previous bulletins, please visit www.brit-thoracic.org.uk/standards-of-care/lung-disease-registries/bts-ild-registry/.

If referring to data included in this bulletin, please cite the BTS ILD Registry and include the date of this bulletin (October 2016).