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Data Collection

Objectives

Inform the economic model

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Highlight the unmet need, through comparison with the general population

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Examine associations with disease severity

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Document the impact of the disease on different dimensions of HRQoL

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Evaluate the burden of caregivers

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Calculate country-specific utility values

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Assess the economic and societal burden of an illness

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Process

Strategic advice on study design​

  • Which outcomes to include

  • Frequency and combination of measurements

  • Clinical, PROM and HCRU outcomes

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Looking glass and Publication icons
Looking glass and publication icons

Ethical committee submission

Contracting, licensing

Liaising with PAGs or doctors

Professional online data collection tool

Analysis and publication of results

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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Here are some of our published studies with EC submissions and digital, paper or face-to-face data collections:​

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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

Scientific journal article preview: Exploration of the reasons why health state valuation differs for children vs adults
POPUP observational digital study reporting population norms
Scientific journal article preview: EQ-5D-Y-3L valuation study
Scientific journal article preview: MyRealWorld MG, Patient-reported burden of myasthenia gravis
Scientific journal article preview: MG-ADL proxy study
Scientific journal article preview: Caregiver burden study

IT Security

Your Data Are Safe With Us.


We are GDPR and NIS2 compliant.
Click here to see some of the ways we protect your data. 

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

  • ​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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Statistical Analysis

Economic Modelling

Data Collection

Literature Review

Publications

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