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Patient involvement in ERS Task Forces Nicola Cassidy, Irish Lung Fibrosis Association

Patient involvement in ERS Task Forces Nicola Cassidy, Irish Lung Fibrosis Association. ERS IPF Task Force. 15 Task Forces –including : Home mechanical ventilation; Lung cancer; Pulmonary rehabilitation; Asthma; Primary ciliary dyskinesia; Bronchiectasis. The ERS IPF Task Force – why?.

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Patient involvement in ERS Task Forces Nicola Cassidy, Irish Lung Fibrosis Association

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  1. Patient involvement in ERS Task Forces Nicola Cassidy, Irish Lung Fibrosis Association

  2. ERS IPF Task Force 15 Task Forces –including: Home mechanical ventilation; Lung cancer; Pulmonary rehabilitation; Asthma; Primary ciliary dyskinesia; Bronchiectasis

  3. The ERS IPF Task Force – why? • To review guidelines and produce an updated statement including patient perspectives via the ELF

  4. ERS IPF Task Force – How? • ELF invited IPF patient organisations the AIR meeting in Nice 2013 to get involved by holding focus groups • Focus groups (over 50 patients): • ILFA, Ireland • BVL, Belgium • AMA fuoridalbuio, Italy • Bristol PF Support Group, UK • Complementary literature: • Lung fibrosis quality criteria questionnaire, Netherlands, 2011 • EU IPF Patient Charter, 2014

  5. ERS IPF Task Force – what? • The 10 priorities integrated into the Task Force manuscript for publication in 2016: • rapid diagnosis - understanding IPF staging • lung transplantation - access to clinical trials • pulmonary rehabilitation - medication issues • psychological support - communication • advanced care quality of life information and support • Communication and support paper planned for 2016

  6. Opportunities - Conferences and networking

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