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Database and Coding Working Group ERS 2017

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Database and Coding Working Group ERS 2017

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Database and Coding Working Group ERS 2017

  1. 1. Databases & Coding Validation Working Group Meeting CHAIR: Katia Verhamme DATE: Saturday 9th September 2017 TIME: 8.20–9.00 VENUE: Melia Milano Hotel, Via Masaccio 19, Milan, Italy
  2. 2. Agenda 1) Update on current project ‘Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO)’. 2) Any new project ideas? and how these ideas should be prioritised.
  3. 3. 1) Update on current project Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO).
  4. 4. 1. Development of a checklist with optimum and minimum required variables for respiratory research. 2. Develop a repository of respiratory databases in which each database is characterised against this new checklist. Aims
  5. 5. Aim 1 Checklist with optimum and minimum required variables A Delphi panel has been set up involving: • Editors • Governmental decision makers • Healthcare professionals, • Academia • Industry • Guideline and respiratory association representatives • Representatives from a broad geographical area. The full scope of ideal variables for an ideal database have been identified.
  6. 6. Delphi Panel 0 1 2 3 EAACI ISPOR ERS Number Society 0 1 2 3 4 5 6 Asthma COPD ILD Allergy Child Health Health Economics Pimary Care Databases Numberofmembers Discipline 0 2 4 6 8 10 12 14 16 Europe S America N America Asia Oceania Africa Number Con nent 0 1 2 3 GINA GOLD Number Guideline Group ≥1 panel member from: Each discipline ✔ Each continent ✔ ≥10 panel members must reply ✔ n=22 A Society ✔ A Guideline Group ✔
  7. 7. Results Excellent agreement on a majority of the questions Variables No. of questions >80% agreement Questions with <80% agreement 1 Record duration 2 2 (100%) 2 Lifestyle & Demographics 28 25 (89%) • Time of birth • Obesity • Dependents 3 Lung function 7 6 (86%) • Exhaled breath condensate 4 Drug coding 2 2 (100%) 5 Management interventions 17 17 (100%) 6 Disease Coding 6 6 (100%) 7 Morbidities 30 29 (97%) • Nasal hyper-reactivity
  8. 8. Results continued Variables No. of questions >80% agreement Questions with <80% agreement 8 Mortality 4 4 (100%) 9 Healthcare contacts 25 24 (96%) • Personnel time 10 Exacerbations 3 3 (100%) 11 Patient reported outcomes 15 12 (80%) • Asthma symptom utility index • Quality of life-ABP • RCP3 12 Laboratory tests 13 11 (85%) • DPPIV • Serum periostin 13 Imaging 10 7 (70%) • MRI coded by disease • PET • PET coded by disease
  9. 9. Next step Commence Delphi Phase II: Identify minimally required variables. • Methods? • Action plan? Followed by Delphi Phase III- Prioritization of the minimally required variables. Dissemination of current results. Plan for Phases II and III.
  10. 10. Aim 2 Develop a database repository and apply generated checklist • Collecting databases and characteristics from- o REG members o Through literature search o Through Bridge to Data, ENCePP search engines • Applying the checklist o Collaborators will complete the checklist on these databases and will present the overview on a web-based REG/UNLOCK platform.
  11. 11. 2) Any new project ideas?

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