International Primary Care Respiratory Group working locally, collaborating globally

UNLOCK: using real life primary care population data

• UNLOCK - Uncovering and Noting

Long-term Outcomes in COPD and

asthma to enhance Knowledge

• Protocol summary published in Primary

Care Respiratory Journal (2010); 19(4):

408

• An international collaboration between

primary care researchers to coordinate

and share datasets of relevant

diagnostic and follow-up variables for

COPD and asthma management in

primary care

A wealth of data from a range of contexts

• 14 countries: Sweden, Spain, Ukraine, Canada, Greece, UK,

Netherlands, Norway, Australia, Portugal, Germany, Belgium,

India and Chile

• Potential to include data from over 90,000 patients with COPD

and 300,000 patients with asthma

• Potential for additional data from 1 million + primary care

patients

• Minimum membership requirements: Funded and independent

COPD/asthma dataset; informed consent as appropriate;

longitudinal data; variables include symptoms, lung function and

quality of life.

How UNLOCK works

• Regular meetings of UNLOCK Group members:

• prioritise study questions

• share progress

• disseminate findings

• 1 UNLOCK member leads each study and others contribute data

• UNLOCK researcher supports studies

• Agreed guidelines for authorship

• UNLOCK Steering Committee provides oversight

• A virtual forum for collaboration (the IPCRG web platform)

• Rosetta project: support for data merging and analysis

• Financial and scientific progress overseen by the IPCRG Board

UNLOCK key findings so far: study 1

• How do the GOLD categories of COPD perform when validated

in real life data? (Corresponding author: Dr Rupert Jones)

o The number of patients in each of the new GOLD categories A-D

varies greatly, with some less than 5 percent

o Using the alternate methods of calculating the categories

changes the distribution of patients greatly

o When future risks are assessed the use of FEV1% or highest risk

of exacerbation frequency or FEV1% were much weaker

predictors of future exacerbations than just using previous

exacerbation frequency

o Conclusion: GOLD COPD categories not fit for purpose in

primary care. (March 2013 Letter from Rupert Jones and other

IPCRG colleagues in the Lancet Respiratory Medicine)

UNLOCK key findings so far: study 2

• Real-life COPD patients compared to large trial populations:

An UNLOCK external validity study. A.Kruis, B. Stallberg, R.

Jones, I. Tsiligianni, J.W. Kocks, T.van der Molen, N. Chavanes

o Primary care COPD patients stand out from patients enrolled

in LPCS in terms of gender, lung function, quality of life and

exacerbations. More research is needed to determine the

effect of pharmacological treatment in mild to moderate

patients.

Presented at the European Respiratory Society, 2013, session

on management of respiratory diseases in primary care,

Barcelona, Spain, pp 289.

Published in PLOS ONE March 2014

http://www.plosone.org/article/info%3Adoi

%2F10.1371%2Fjournal.pone.0090145#pone-0090145-t004

UNLOCK key findings so far: study 3

• A comparison of multi-component indices of COPD severity

in primary care: An UNLOCK study from the IPCRG.

R.Jones, D.Price, N. Chavannes, A. Lee, E. Gabe-Thomas, B.

Stallberg, K. Lisspers, J. Sundh

o The DOSE index is better than the ADO index for predicting

a wide range of outcomes in a diversity of COPD patients.

Our findings support the use of the DOSE index as a simple

tool in routine clinical practice to identify those at high risk of

exacerbations and admissions in primary care COPD

populations.

Presented at the European Respiratory Society, 2013, session

on management of respiratory diseases in primary care,

Barcelona, Spain, pp 289

New UNLOCK priorities

• Analysis of the clinical relevance of morning symptoms in

respiratory patients

• Assessment of management of COPD treatment

• The prevalence of comorbidities in COPD patients and

their impact on the quality of life in primary care patients

• Are pharmacological RCTs relevant to real life asthma

populations

• Getting UNLOCK findings into practice: publications, peer-

education, e-learning, practical resources