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. 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. Update on current project
Towards Optimum Reporting of Pulmonary Effectiveness Databases and Outcomes (TORPEDO).

4. Aims
Development of a checklist with optimum and minimum required variables for respiratory research.
Develop a repository of respiratory databases in which each database is characterised against this new checklist.

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. ≥1 panel member from: Each discipline ✔ Each continent ✔
Delphi Panel
≥10 panel members must reply ✔ n=22
≥1 panel member from: Each discipline ✔ Each continent ✔
A Society ✔
A Guideline Group ✔

7. Questions with <80% agreement
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%)
Lifestyle & Demographics 28
25 (89%)
Time of birth
Obesity
Dependents 3
Lung function 7
6 (86%)
Exhaled breath condensate 4
Drug coding 5
Management interventions 17
17 (100%) 6
Disease Coding
6 (100%)
Morbidities 30
29 (97%)
Nasal hyper-reactivity

8. Questions with <80% agreement
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
Imaging
7 (70%)
MRI coded by disease
PET
PET coded by disease
Main areas of disagreements on need of patient reported outcomes, lab results and imaging.
These items are not always well(routinely) documented in databases and some tests are very specific.

9. Next step Dissemination of current results.
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. Aim 2 Develop a database repository and apply generated checklist
Collecting databases and characteristics from-
REG members
Through literature search
Through Bridge to Data, ENCePP search engines
Applying the checklist
Collaborators will complete the checklist on these databases and will present the overview on a web-based REG/UNLOCK platform.

11. 2) Any new project ideas?