The ALS Care Pathway Working Group, established by the ERN EURO-NMD, is working to develop a European care pathway for Amyotrophic Lateral Sclerosis (ALS) as part of the JARDIN Joint Action (Task 6.2).
As part of this initiative, we are inviting people living with ALS and their carers across Europe to share their experiences through an online questionnaire.
Why is this questionnaire important?
The aim of this questionnaire is to better understand the needs, experiences and priorities of people living with ALS and their carers across Europe.
The feedback collected will help to:
- identify gaps in care, support and coordination
- capture unmet needs that may not currently be addressed in existing resources or guidelines
- better understand the real-life experiences of patients and carers
These insights will help inform the European ALS care pathway currently in development, with the ultimate goal of improving and harmonising ALS care and support across Europe, where important disparities remain between countries.
To ensure that the results accurately reflect the situation across the continent, we are aiming to reach participants from as many European countries as possible, including countries that are currently underrepresented in international studies.
Who can participate?
This questionnaire is open to:
- People living with ALS
- Carers and family members supporting a person living with ALS
Please note:
- It is possible to participate on behalf of a person living with ALS who may be unable to complete the questionnaire.
- It is also possible to participate on behalf of a patient community or support group, where responses reflect the collective experiences of a group of people living with ALS
- Bereaved carers are welcome to complete the questionnaire, sharing the experience of supporting a person with ALS who has passed away.
- Participants from all European countries are invited to contribute, including EU and non-EU countries.
At the beginning of the questionnaire, participants will be asked to select their role (person living with ALS or carer). Based on this selection, the questionnaire will follow the version most relevant to their situation.
Practical information and links
Participation is voluntary and anonymous. You may skip any question if you prefer not to answer or if it does not apply to your situation.
The questionnaire is currently available in multiple European languages.
You are welcome to write in your own language. To facilitate analysis using translation tools, we kindly ask that you use clear and simple sentences to avoid possible misinterpretation.
Please select the link below corresponding to your preferred language:
| English (EN) | Eesti (ET) | Italiano (IT) | Русский (RU) | |||
| Shqip (SQ) | Suomi (FI) | Latviešu (LV) | Српски (SR) | |||
| Български (BG) | Français (FR) | Lietuvių (LT) | Slovenčina (SK) | |||
| Català (CA) | ქართული (KA) | Malti (MT) Coming soon | Slovenščina (SL) | |||
| Hrvatski (HR) | Deutsch (DE) | Norsk (NO) | Español (ES) | |||
| Čeština (CS) | Ελληνικά (EL) | Polski (PL) | Svenska (SV) | |||
| Dansk (DA) | Magyar (HU) | Português (PT) | Türkçe (TR) | |||
| Nederlands (NL) | Íslenska (IS) | Română (RO) | Українська (UA) |
The questionnaire will remain open until: Thursday 30 April 2026
Share the questionnaire!
Please feel free to share this questionnaire within your networks or with relevant contacts in your country or region, to help us reach as many participants as possible across Europe: patients living with ALS, ALS/motor neuron diseases patient organisations and support groups, as well as family members and carers.
Contact
If you have questions about the project, please contact:
Houda Ali
Project Manager, ERN EURO-NMD
h.ali@ern-euro-nmd.eu