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Stakeholder Survey:
Development of Memory Disorder Patient Registries in the European Union

Background

The European Medicines Agency (EMA) and Heads of Medicines Agencies (HMA) multi-stakeholder workshop on Alzheimer’s disease patient registries (15 December 2025) highlighted the need to strengthen collaboration, harmonisation, and sustainability of registry infrastructures across the EU.

This survey aims to gather stakeholder perspectives on priorities, governance, data standards, and future development needs for memory disorder patient registries and treatment implementation services in Europe.

All responses will be analysed in aggregate form.

This survey is a part of an EU regional funding project (ERFP). With the support of the ERFP, StellarQ is preparing for international expansion into the Nordic countries and more broadly across the EU. During the project, we will explore the possibilities for scaling the StellarQ disease monitoring platform for long-term diseases, such as Alzheimer's disease, on the European level. The one‑year project began in January 2026.
Section 1 - Respondent Information
1.Please indicate your organisation type(Required.)
2.If you answered Pharma, please specify your role in your organisation.
3.What is the primary scope of your organisation's activities?(Required.)
4.In which country are you primarily working?(Required.)
Section 2 - Current State of Alzheimer's Disease Registries
5.To what extent do existing Alzheimer's disease registries meet your organization's needs?(Required.)
Very poorly
Poorly
Adequately
Well
Very well
N/A / Do not know
On a national level
On EU level
On a global level
6.In your view, what are the main gaps or challenges in current registry systems? (Please select up to five.)(Required.)
Section 3 – Harmonised Core Dataset
7.How important is the development of a harmonised core dataset for Alzheimer’s disease registries?(Required.)
Not important
A little important
Neutral / Moderate importance
Important
Extremely important
N/A / Do not know
On a national level
On EU level
On a global level
8.Please rate the importance of including the following variable categories in a core dataset:(Required.)
Not important
A little important
Neutral / Moderate importance
Important
Extremely important
Demographic information
Diagnostic criteria and classification
Structural brain imaging data
Functional brain imaging data
Adverse events and safety outcomes
Biomarkers (e.g., imaging, CSF, blood-based markers)
Treatment exposure and dosing
Functional and cognitive outcomes
Behavioural/Neuropsychiatric symptoms
Patient-reported outcomes (PROs)
Caregiver-reported information
Section 4 – Use of Registry Data
9.For which purposes should Alzheimer’s disease registry data primarily be used? (Please select up to five.)(Required.)
10.How reliable do you consider registry data to be for supporting regulatory or reimbursement decision-making?(Required.)
Not reliable
Slightly reliable
Moderately reliable
Very reliable
Highly reliable
N/A / Do not know
Section 5 – Governance and Sustainability
11.Which funding model would provide the most sustainable long-term solution for Alzheimer’s disease registries?(Required.)
12.How important is the establishment of a coordinated EU-level governance framework for Alzheimer’s disease registries?(Required.)
Not important
A little important
Neutral / Moderate importance
Important
Extremely important
N/A / Do not know
Section 6 – Patient and Caregiver Involvement
13.To what extent should patients and caregivers be involved in the design, governance, and oversight of registries?(Required.)
No involvement
Some involvement
Moderate involvement
High involvement
Full partnership involvement
N/A / Do not know
14.Which patient-centred outcome measures should be prioritised in future registry development?(Required.)
15.What are the most important development priorities for implementing Alzheimer’s disease diagnosis, treatment, and follow-up using real-world evidence data?
16.StellarQ has a scalable solution for memory disorders, including Alzheimer's disease. It combines both a registry and a prospective, EHR-integrated platform for diagnosis, treatment, and patient follow-up.

Would your organisation be interested in hearing more about it?(Required.)
17.Please write your email here, if you are interested in hearing more.
18.Would you be interested in to receive the summary of this survey?(Required.)
19.Please write your email here if you are interested in receiving the summary