Data Collection
Objectives
Inform the economic model
Highlight the unmet need, through comparison with the general population
Examine associations with disease severity
Document the impact of the disease on different dimensions of HRQoL
Evaluate the burden of caregivers
Calculate country-specific utility values
Assess the economic and societal burden of an illness
Process
Strategic advice on study design​
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Which outcomes to include
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Frequency and combination of measurements
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Clinical, PROM and HCRU outcomes
Features of data collection
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Study type: clinically-oriented or observational
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Respondents: general population or patients
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Respondent type: one respondent or tandems (of patients and their specialist; of patients and their caregiver).
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Mode: face to face or digital (web, app, or Zoom)
Ethical committee submission
Contracting, licensing
Liaising with PAGs or doctors
Professional online data collection tool
Analysis and publication of results
Collecting all necessary data
to optimize the case for reimbursement
Patient and disease characteristics
Economic variables
Health-Related
Quality of Life
Age
Gender
Country
Education
Bio-markers
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Medical history
Diagnosis and misdiagnosis
Surgeries
Long-term adverse events
Current and past treatment
Treatment satisfaction
Side effects
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Medical resource utilization
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Out-of-pocket costs
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Work productivity, sick leave and unemployment
Utility values
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Disease-specific PROMs and generic HRQoL measures
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PROs for measuring Pain, Fatigue, Sleep, Anxiety, Depression
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Caregiver Burden
Timeline
Month 1
Month 2
Month 3
Month 4
Month 5
Month 6
Month 7
Month 8
Month 9
Month 10
Month 11
Month 12
Survey Design
Ethical Committee
Programming
KOL / Study Centre, for 5 countries
Data Collection
Statistical Analysis
Dashboard
Dissemination of results:​
We typically publish 4 manuscripts per study.​
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​Manuscript 1: EQ-5D utilities for all patients, by disease severity, in subgroups, and for health economic model health states
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Manuscript 2: detailed description of HRQoL (e.g. sleep, fatigue, pain, mental health impact)
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Manuscript 3: direct medical costs, indirect costs and societal costs. Costs per health state, per disease severity.
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Manuscript 4: the pathway to diagnosis, misdiagnosis, time to diagnosis, treatments received, treatment satisfaction​
Month 12
Month 13
Month 14
Month 15
Month 16
Month 17
Month 18
Manuscript 1
Manuscript 2
Manuscript 3
Manuscript 4
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Examples of Recent Published PROM Studies
Some of our published studies with EC submissions and digital, paper or face-to-face data collections:​
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Child versus Adult valuation of health states: including TTO interviews and qualitative analysis in NVIVO software​
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POPUP: a digital observational population study in 8 countries among the general population, to document EQ-5D-5L and HUI3 population norms, and to conduct psychometric analyses on EQ-5D bolt-on instruments (with support from EuroQoL)
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EQ-5D-Y-3L valuation study: for a youth value set for Belgium: collection of TTO and DCE data among the Belgian general population, with support from the EuroQoL and the KCE in Belgium
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MyRealWorld-MG: a digital study among patients suffering from Myasthenia Gravis, in collaboration with Vitaccess Ltd to document the HRQoL, utilities, productivity losses and medical resource utilization of patients
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MG-ADL proxy study: clinical data collection among patients and their neurologist to validate the proxy versus self measurement of the main MG clinical outcome measure MG-ADL
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Caregiver Burden study: observational data collection among patients and caregivers to document the burden that caregivers experience and whether this burden is associated with disease severity
