NECTAR – Screening component of AMBRoSIA

To provide a rapid, effective and comprehensive genetic screening for those with ALS who are participating in research as part of the AMBRoSIA Project.

Pietro Fratta

Lead Investigators: Professor Janine Kirby and Professor Pietro Fratta

Lead Institution: University of Sheffield and University College London

MND Association Funding: £382,000

Funding dates: September 2016 - January 2023

About the project

The NECTAR project will use the blood samples collected as part of the AMBRoSIA programme and conduct genetic analysis on these samples, looking for genetic mutations and variations known to be linked to MND. The results of these analyses will be used for research, to see if there are specific biomarkers that characterise the genetic forms of MND. There will also be the option for the person with MND, their families and future family members to find out the results of their genetic analysis - in other words, whether they are carriers of MND-related genes.

What does this mean for people living with MND?

NECTAR will compare the results from the genetic screening with the results from the AMBRoSIA biomarker testing. This could lead to a potential test to help with diagnosis as well as with predicting the rate of disease progression for people with MND in the future. This screening could identify gene changes in people with MND who have no family history of the disease and would not normally be offered genetic screening. This means that those with MND who have gene changes might be able to take part in clinical trials for gene therapies that they otherwise wouldn’t know they were eligible for.

Project code: 974-797