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) oThe number of patients in each of the new GOLD categories A-D varies greatly, with some less than 5 percent oUsing the alternate methods of calculating the categories changes the distribution of patients greatly oWhen 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 oConclusion: 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 oPrimary 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 al.pone #pone 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 oThe 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