ALS biomarker study

Collecting biological samples to search for biomarkers.

The ALS biomarkers study is a research project conceived with the ultimate goal of understanding more about what goes wrong in ALS (the most common form of MND) and how the disease develops from an initial faulty event. The study aims to discover a biomarker to speed up the diagnosis of MND, to monitor its progression and assess whether a new therapy may be effective.

What does taking part involve?

Participants will be asked to donate a sample of biological fluid (blood and urine) every three months, or when they attend their regular clinic appointments as part of their routine care. You will also be given the option to donate a sample of cerebrospinal fluid (CSF) – the fluid found in the spinal cord – as well as a skin sample (both of these samples can only be donated for a maximum of three time points).

We have recently introduced remote sampling to this study protocol, in which biological sampling kits (for blood, urine, stools and saliva/cheek swab) with detailed instructions will be posted to participants. Questionnaires will also be sent to participants via e-mail, and heart rate data will be collected via mobile app (for those who have/are comfortable using a smartphone). These procedures are optional, but will enable participants to send us‎ samples and data comfortably from home. We would be very grateful to also have samples from participants when they attend their regular clinic appointments. We will follow up with participants for remote sample collection every 6 months.

Study location

UK-wide (remote)

Barts and London MND Care Centre (Royal London Hospital, EH1 1BB)

Who can take part?

• People living with ALS

• Healthy controls (people without ALS)

• Neurological controls (people affected by other neurological disorders)

How do I take part?

Please contact Dr Andrea Malaspina (a.malaspina@nhs.net) to show your interest in the study.

Expiry date: N/A

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262