Stakeholder Meeting 2025

We know from previous research that GBS and CIDP can have a major impact on the lives of patients.

However, at present, there is no questionnaire for measuring all important aspects of these diseases from the perspective of patients.

Developing a specific instrument is important to better understand and learn from the experiences and needs of patients.

With this, we also hope to improve the treatment and care of patients. Together with both patients and healthcare professionals, we have therefore developed a first draft questionnaire.

As part of the development process we are now investigating whether the questions and instructions are clearly and easy to understand for patients.

On 30 September 2024 we organized a stakeholder meeting with GBS and CIDP patients.

During this full-day program we discussed several subjects among which:

• Identifying and categorizing important limitations of GBS and CIDP
• Prioritizing these important limitations
• Selecting the most suitable questionnaires

The discussions throughout the day were productive and insightful.

Thanks to the valuable contributions from patients, we gained feedback that will help us improve the questionnaire so that these can better match the experiences and priorities of patients.