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Databases coding wg 2018

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Minutes from REG Summit 2018

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Databases coding wg 2018

  1. 1. Databases & Coding Validation Working Group Meeting CHAIR: Katia Verhamme DATE: Thursday 22nd March 2018 TIME: 11:00–12:00 VENUE: Park Plaza Hotel, Amsterdam Airport
  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 Delphi exercise Phase I- Identifying the full scope of variables for an ideal database  DONE Phase II- Voting and endorsing of variables to reduce the list to the minimally required variables. Phase III- Prioritization of the minimally required variables.
  6. 6. 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 ✔ Phase I
  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 (American Board of pediatricians)  US only • RCP3 (Royal College of Physicians) UK only 12 Laboratory tests 13 11 (85%) • DPP-IV enzyme • Serum periostin 13 Imaging 10 7 (70%) • MRI coded by disease • PET • PET coded by disease
  9. 9. Next steps The first round of Delphi panel review could be improved by including respiratory disease experts from Lower Middle Income Countries (LMICs) Now working in collaboration with Global Alliance for Chronic Diseases (GACD) • GACD Research Network is able to provide more respiratory disease experts from LMICs so Phase I will be re-run • Currently setting up the domains and variables (aiming for completion 14th Feb) • Inviting nominations for participants (aiming for 26th Feb) • Invited panelists will be given two weeks to complete the survey (aiming to complete by 12th March) Following this- Phase II: Identify minimally required variables. Phase III- Prioritization of the minimally required variables.
  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. Code Sharing- REG website • Need to get the Pydio or some other system re-set up • REG will add all our Red code lists
  12. 12. Ideas for future projects • Harmonised data, conversions, need for a Common Data Model. • Develop an REG tool for coding and database assessment and look at using this and the quality control assessment score on all REG projects.
  13. 13. 2) Any new project ideas? Performance of automatic validation (based on algorithm) vs. Manual validation - study population (asthma/COPD) - outcome (outcome in patients with medical history) - treatment duration - life style factors, ....

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