Database and Coding Working Group ERS 2017

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

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. 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. 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. 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. 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. 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. 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. 2) Any new project ideas?