Data Collection
Multinational HEOR study among patients
1
Respondents: Patients recruited through Patient Advocacy Groups or KOLs
Dissemination of results:
Typically, 4 manuscripts to publish all results
What for?
De novo data collection among patients to collect all HEOR endpoints for economic modelling, and document the burden of disease and unmet need
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​
-
Which outcomes to include
-
Frequency and combination of measurements
-
Clinical, PROM and HCRU outcomes
Ethical committee submission
Liaising with PAGs or doctors
Contracting, licensing
Professional online data collection tool
Analysis and publication of results
Concordance between patient and physician on scoring PROs
2
Respondents: Dyads of patients and their physician
What for?
Clinical data collection among patients and their physician, to validate the proxy versus self-measurement of a clinical outcome, and understand the concordance of items and total score
Caregiver Burden study
3
Respondents: Dyads of patients and their caregiver
What for?
Observational data collection among patients and caregivers to document the burden that caregivers experience, and whether this burden is associated with disease severity
Dissemination of results
We typically publish 4 manuscripts per study.
​
Here are some of our published studies with EC submissions and digital, paper or face-to-face data collections:​
Study among the General Population to measure HEOR endpoints
4
Respondents: Representative members of the general population
​
​The Study Protocol for GENESIS: GENEral population normS—an International Survey to establish normative values for PROMs in CIDP, MMN, and TED. medRxiv. Submitted September, 2025
What for?
Obtain reference values of the PROMS and clinical endpoints measured in your RCT and observational studies, for better interpretation of the scores and documenting the unmet need
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.